Tommorow is December 17th, which will mark what I've heard others call, my re-birthday. It will be one year since my stem cell transplant, and it feels great that I'm back to work, feeling good, and able to spend so much time with my family. A year out from transplant, I would like to be cancer and GVHD free, but that isn't to be. Even though I still have to deal with those issues, I am feeling great.
Right now I am on my third cycle of Ontak. I had the second cycle in November, and the higher dose I received hit me a bit harder than the first cycle. Its hard differentiating between what symptoms are caused by GVHD, the Ontak, or maybe just unrelated symptoms, but it wasn't the most pleasant month. It was probably a combination of issues, but I haven't felt like myself lately. One thing that was definitely effected was my appetite. I haven't been able to eat as much as normal, and this week I found out that I lost 16 pounds, from 208 to 192 in the last month. 192 might sound fine to some people, but my weight hasn't been that low since I was 15. I didn't trim my fat to 1% and look all cut, but I've lost a lot of muscle mass. I can tell my strength isn't what it used to be, and thats a bit frustrating. I'm definitely looking forward to a point when I'm not on treatment, and have the energy to begin working out again.
So the weight loss recently is going to lead to an endoscopy this week. I'll have that procedure on Friday, with the intent of learning if there is any GVHD or other explanatory factor for my loss of appetite in my GI tract. The GI doctor I met with on Monday, seemed to think that my weight loss is being caused by the Ontak, which he explained can speed up metabolism and decrease appetite. Kate thinks that combination should be marketed as a weight loss tool. If the reason for the loss of appetite is attributable to the medication though , then they can give me other medications to help stimulate my appetite.
The other news came from my PET scan results. From September to November, my scans showed that my lesions decreased from 7 to 4. On this scan after cycle 2, one more lesion disappeared, leaving me with just 3. The main spot where the original tumor was located was stable. A lesion near my shoulder decreased, and the third lesion which was near the original tumor grew in sizeand intensity.
Overall this report is a mixed result. Its great news in three ways...there was no new growth, another lesion of activity disappeared, and one more lesion continued to decrease. The stability of the original tumor is positive, because it had grown slightly on the previous PET scan. The big question is what is going on with the one lesion that is both larger and more intense, while everything else is improving or in check? My doctor can't explain what it could be, and his thought is to proceed with my third dose of Ontak, since it appears to be working with all of these other spots. I'll have another PET scan in January, and he'll decided on a course of treatment based on those results. Its possible that if this lesion responds to the Ontak this time around, that more Ontak will be used. However, if there is more unexplained results, then some consultation will need to be done to determine a further course of action. I usually don't think about my PET scans leading up to them, but this latest result and discussion has me really looking forward to the next scan already.
So this evening I will receive my second of five Ontak infusions for cycle 3. I've had positive results from the first two cycles, and hopefully there will be more progress towards eliminating the cancer after this cycle is done.
Wednesday, December 16, 2009
Friday, November 13, 2009
Good Pet Scan Results
Had a PET scan today, and the news was pretty good. After my last PET scan in September showed some regrowth, this scan after receiving one round of Ontak as treatment showed a reversal of the cancer activity. My doctor didn't have the full radiologist's report yet, but shared that there were 7 lesions of activity in September, and that 3 of those have completely disappeared. The other 4 lesions have all shrunk considerably as well.
The one area that isn't a complete positive is that the main tumor mass looked to be about the same size, if not slightly bigger. Of course I'd want to hear that this area shrunk as well, but it has to be taken into consideration that I didn't start Ontak until three weeks after my PET scan. Therefore the tumor mass could have been larger when I started the treatment, since we didn't have a true baseline.
So now that we have that information, I'll be starting my next round of Ontak tommorow. Its good going into this next round that the drug works. Its also nice to know that the doctors will be increasing the level of Ontak I'll be receiving, so hopefully I'll have an even better response. My doctor thinks 3 or 4 rounds of Ontak are likely, and he wants to take a scan after each round to follow it closely.
So my family and I are very happy with the results. The only thing bothering me now is some apparent infection in my mouth. I've had flareups of the GVHD in my mouth before, but this appears to be something else going on. It could be from the flu I had a few weeks ago, but I'm past the nasty flu symptoms at least. My energy is back up, I'm not coughing and blowing my nose constantly, and everything else is decent.
The one area that isn't a complete positive is that the main tumor mass looked to be about the same size, if not slightly bigger. Of course I'd want to hear that this area shrunk as well, but it has to be taken into consideration that I didn't start Ontak until three weeks after my PET scan. Therefore the tumor mass could have been larger when I started the treatment, since we didn't have a true baseline.
So now that we have that information, I'll be starting my next round of Ontak tommorow. Its good going into this next round that the drug works. Its also nice to know that the doctors will be increasing the level of Ontak I'll be receiving, so hopefully I'll have an even better response. My doctor thinks 3 or 4 rounds of Ontak are likely, and he wants to take a scan after each round to follow it closely.
So my family and I are very happy with the results. The only thing bothering me now is some apparent infection in my mouth. I've had flareups of the GVHD in my mouth before, but this appears to be something else going on. It could be from the flu I had a few weeks ago, but I'm past the nasty flu symptoms at least. My energy is back up, I'm not coughing and blowing my nose constantly, and everything else is decent.
Tuesday, October 27, 2009
Ontak and Light the Night
Well its been a tiring week for me, and its kept me from writing until now. The 17th was the Light the Night Walk, and I'd label it a success. The final number that John Blattner Hates Cancer raised is over 6,000 dollars. So the group easily passed the goal I set of 5,000 dollars. Thanks again to everybody who donated money. Our total was part of over half a million dollars raised at the DC walk for the Leukemia and Lymphom Society. The weather at the walk wasn't great, but our team probably had over 20 people walking, which was a great turnout. I got to spend time with plenty of family that weekend, which was another great benefit to the walk.
The walk was Saturday night, and Sunday morning I headed over to NIH to the inpatient unit where I've spent over 45 days during the last year. It was nice to know I wouldn't be spending an extended amount of time there. I started the Ontak infusion that day, and didn't have any significant side effects. I had a slightly elevated temperature in the middle of the night, and a slightly depressed blood pressure. Those effects weren't enough to necessitate staying as an inpatient, so I was able to finish the five daily infusions as an outpatient.
As the week went on I started feeling a little more exhausted with the Ontak infusions. I assumed the cumulative effect of five infusions was starting to wear on me a bit, but a slight cough I had started the week with became more and more irritating. This past weekend my temperature went up to 101.9 at one point, and the on call doctors at NIH put me on tamiflu because of my symptoms. The following day I got a call from one of my nurses that I had indeed tested positive for influenza A.
Its been a rough weekend, and I ended up missing more time at work than I would have liked. I already am missing enough in my opinion with the Ontak infusions, and a bout of flu isn't helping me stay on top of work. The good news I can take from this is that the Ontak infusion was likely tougher to deal with because of the flu, and the next infusion might be even easier.
Right now its a few weeks until I'll start the next round of Ontak. The plan before then is to have another PET scan to see how the cancer activity is looking. Hopefully it will show that the Ontak has made some progress. One bit of news that my nurse practicioner shared is that the protocols at NIH that use Ontak have been giving the same amount of the drug that I received. However, they have noticed very little toxicity with that amount, and are changing their protocol to double the dose given to patients. So it is likely that since I handled the first round of infusions so well, that I will get the higher dose next time around. I'm certainly not going to complain about a little more ammunition being used to wipe out this cancer.
So right now I am feeling better than I was a few days ago, but still dealing with the fatigue and muscle aches that the flu can bring. In terms of treatment, I'm just waiting for the next opportunity to take the Ontak and further knock this cancer away.
The walk was Saturday night, and Sunday morning I headed over to NIH to the inpatient unit where I've spent over 45 days during the last year. It was nice to know I wouldn't be spending an extended amount of time there. I started the Ontak infusion that day, and didn't have any significant side effects. I had a slightly elevated temperature in the middle of the night, and a slightly depressed blood pressure. Those effects weren't enough to necessitate staying as an inpatient, so I was able to finish the five daily infusions as an outpatient.
As the week went on I started feeling a little more exhausted with the Ontak infusions. I assumed the cumulative effect of five infusions was starting to wear on me a bit, but a slight cough I had started the week with became more and more irritating. This past weekend my temperature went up to 101.9 at one point, and the on call doctors at NIH put me on tamiflu because of my symptoms. The following day I got a call from one of my nurses that I had indeed tested positive for influenza A.
Its been a rough weekend, and I ended up missing more time at work than I would have liked. I already am missing enough in my opinion with the Ontak infusions, and a bout of flu isn't helping me stay on top of work. The good news I can take from this is that the Ontak infusion was likely tougher to deal with because of the flu, and the next infusion might be even easier.
Right now its a few weeks until I'll start the next round of Ontak. The plan before then is to have another PET scan to see how the cancer activity is looking. Hopefully it will show that the Ontak has made some progress. One bit of news that my nurse practicioner shared is that the protocols at NIH that use Ontak have been giving the same amount of the drug that I received. However, they have noticed very little toxicity with that amount, and are changing their protocol to double the dose given to patients. So it is likely that since I handled the first round of infusions so well, that I will get the higher dose next time around. I'm certainly not going to complain about a little more ammunition being used to wipe out this cancer.
So right now I am feeling better than I was a few days ago, but still dealing with the fatigue and muscle aches that the flu can bring. In terms of treatment, I'm just waiting for the next opportunity to take the Ontak and further knock this cancer away.
Sunday, October 11, 2009
New Treatment
I've tried to write an update a few times over the last week or so, and for whatever reasons I haven't been able to get through it. So I'll try to include as much as has been going on since the most recent PET scan.
The biopsy of my lymph node was delayed about a week because all of the interventional radiologists at NIH were away for a conference the week after my PET scan. However, I went in on a Monday morning and had them draw some tissue from the lymph node under my armpit, and the waiting was on. The first news I got was from my Dad, who knows one of the pathologists at NIH. He let me know in the middle of that week that the samples were cancerous. So keeping the fingers crossed that the PET was incorrect didn't help.
The stains that were run on my tissue samples took a few days longer to be analyzed, so there wasn't any other major news that week. However, my doctors had switched me back to sirolimus because it is for immune suppression while also having anti-tumor effects. One of the side effects of sirolimus though is mouth sores, and my mouth and throat definitely flared up after starting back on sirolimus. So for the last week or so I've been having trouble swallowing and eating most foods, much like I had trouble with before starting on prednisone back in June.
Last week my parents and I met with my doctor. He shared that the biopsy results showed no CD20 markers, but an abundance of cells with CD25 and CD30 markers. What this means is that the plan to use Rituxan, the anti-CD20 antibody, is not an option. The good news regarding those other markers, is that there are drugs available for treating both of those as well. The anti-CD30 antibody is currently in trial through the company that is developing it. My doctor was confident that NIH would be able to gain access to it for my use, but the paperwork might take a while. the anti-CD25 treatment is called Ontak, and is readily available at NIH. Since my cancer has been pretty aggressive in the past, the recommendation was to start with Ontak now, and possibly keep the option of the CD30 treatment for the future. The pathology from my biopsy showed a high prevalence of both CD25 and CD30 markers, so they should both react well to whichever treatment was used.
Part of the Ontak drug is a toxin, diptheria, which will help kill the cancer cells after they are identified. The main side effect of this toxin involves capillary leaking. This is when fluid will leak out of the capillaries and cause swelling. The risk of this happening in the lungs could cause severe flu like symptoms. Another possible side effect of Ontak is loss of vision. These don't sound like much fun, but my doctor didn't seem overly worried about them. I asked about how this might compare to the chemotherapy I've had in the past, and he stated that he just couldn't say. Its possible that my body could handle it much better or possibly worse. So who knows. However, most things I've read show that most people only have mild or moderate side effects from Ontak.
Another benefit of Ontak is that it has successfully been used as a treatment for GVHD. Since my GVHD is still a big issue right now, it would be great to have the anti-cancer effects of this drug as well as some help with my GVHD symptoms. I certainly hope to have positive results on both fronts from this drug.
So this week I will try to get started on the Ontak protocol. My doctor said we can try to maneuver around my work schedule, and I am curious as to how that will work out. Ontak is administered over five consecutive days, and I wonder how much time in the hospital that will require for each of those visits. There are definitely a lot of details with this therapy that I don't have yet, but the plan seems good for now. Its possible that after Ontak, more treatment, such as a boost of donor cells or more chemotherapy might be used in order to really try and knock my cancer out. Those type of decisions will of course be decided later.
Less than a week from now will be the Light the Night Walk for Washington, DC. I'm very proud that the team I've set up is just 25.00 dollars away from the goal of 5,000 dollars that I set. Thanks to everybody who has given to this cause to help the Leukemia and Lymphoma Society. The longer I keep dealing with this disease, it makes me realize how important that events like this are held that allow organizations like this to assist patients and further research. http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
The biopsy of my lymph node was delayed about a week because all of the interventional radiologists at NIH were away for a conference the week after my PET scan. However, I went in on a Monday morning and had them draw some tissue from the lymph node under my armpit, and the waiting was on. The first news I got was from my Dad, who knows one of the pathologists at NIH. He let me know in the middle of that week that the samples were cancerous. So keeping the fingers crossed that the PET was incorrect didn't help.
The stains that were run on my tissue samples took a few days longer to be analyzed, so there wasn't any other major news that week. However, my doctors had switched me back to sirolimus because it is for immune suppression while also having anti-tumor effects. One of the side effects of sirolimus though is mouth sores, and my mouth and throat definitely flared up after starting back on sirolimus. So for the last week or so I've been having trouble swallowing and eating most foods, much like I had trouble with before starting on prednisone back in June.
Last week my parents and I met with my doctor. He shared that the biopsy results showed no CD20 markers, but an abundance of cells with CD25 and CD30 markers. What this means is that the plan to use Rituxan, the anti-CD20 antibody, is not an option. The good news regarding those other markers, is that there are drugs available for treating both of those as well. The anti-CD30 antibody is currently in trial through the company that is developing it. My doctor was confident that NIH would be able to gain access to it for my use, but the paperwork might take a while. the anti-CD25 treatment is called Ontak, and is readily available at NIH. Since my cancer has been pretty aggressive in the past, the recommendation was to start with Ontak now, and possibly keep the option of the CD30 treatment for the future. The pathology from my biopsy showed a high prevalence of both CD25 and CD30 markers, so they should both react well to whichever treatment was used.
Part of the Ontak drug is a toxin, diptheria, which will help kill the cancer cells after they are identified. The main side effect of this toxin involves capillary leaking. This is when fluid will leak out of the capillaries and cause swelling. The risk of this happening in the lungs could cause severe flu like symptoms. Another possible side effect of Ontak is loss of vision. These don't sound like much fun, but my doctor didn't seem overly worried about them. I asked about how this might compare to the chemotherapy I've had in the past, and he stated that he just couldn't say. Its possible that my body could handle it much better or possibly worse. So who knows. However, most things I've read show that most people only have mild or moderate side effects from Ontak.
Another benefit of Ontak is that it has successfully been used as a treatment for GVHD. Since my GVHD is still a big issue right now, it would be great to have the anti-cancer effects of this drug as well as some help with my GVHD symptoms. I certainly hope to have positive results on both fronts from this drug.
So this week I will try to get started on the Ontak protocol. My doctor said we can try to maneuver around my work schedule, and I am curious as to how that will work out. Ontak is administered over five consecutive days, and I wonder how much time in the hospital that will require for each of those visits. There are definitely a lot of details with this therapy that I don't have yet, but the plan seems good for now. Its possible that after Ontak, more treatment, such as a boost of donor cells or more chemotherapy might be used in order to really try and knock my cancer out. Those type of decisions will of course be decided later.
Less than a week from now will be the Light the Night Walk for Washington, DC. I'm very proud that the team I've set up is just 25.00 dollars away from the goal of 5,000 dollars that I set. Thanks to everybody who has given to this cause to help the Leukemia and Lymphoma Society. The longer I keep dealing with this disease, it makes me realize how important that events like this are held that allow organizations like this to assist patients and further research. http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
Thursday, September 17, 2009
Nine Months Post Transplant
Today is nine months out from my bone marrow transplant and I was confident that I would be celebrating a positive result on my PET scan today. However, cancer sucks and it gave us another nasty little surprise. The doctor explained that there were two spots on the PET scan that looked like reoccurences of disease. One of those areas was the area where the main tumor has been located, although he stated that it wasn't a large mass like had been seen previously. The other area of concern is the left axial lymph node, which is located near the left armpit. This is an area where I haven't had any activity before as far as I know.
So its an immediate downer to hear that there has been some regrowth, but its positive to know that since I have been having these PET scans so frequently, that this growth is being caught quickly. Of course the next topic of conversation after what exactly is going on is what are we going to do. The doctor outlined some plans that I'll share about in a minute, but the first thing to be done is a needle biopsy of the lymph node. The pathology from that biopsy will hopefully give a good idea of what this latest growth looks like, and a clearer treatment plan can be outlined. Until the results of that biopsy are back though nothing will change.
The regrowth is probably a result of having to continue on immunosuppressants and adding prednisone in order to quell my chronic GVHD symptoms. I was getting great results on previous PET scans which can be attributed to the new immune system fighting the cancer cells. However, the GVHD symptoms were becoming too much to bear, especially the fact that it was impossible for me to swallow without severe pain. While my GVHD symptoms have improved since June, it appears that having to fight the GVHD has stopped the graft versus tumor effect which is key to eliminating all of the disease. Therefore the plan of treatment right now is to aggressively taper me off of the prednisone, while restarting me on one of my immunosuppressants, sirolimus. The doctor explained that sirolimus can have a tumor fighting effect, and I'll have to rely on it to minimalize flareups of the GVHD. I believe tacrolimus, the immunosuppressant I am on now, will be taken off when the sirolimus is reintroduced.
In addition to the changes in medicines relating to the GVHD, the current plan would be to start me on weekly rituxin infusions. Rituxan is a drug that I have taken before as part of my chemotherapy regimen. I didn't have any adverse reactions to it, so I'm not bummed about having to take it. The combination of sirolimus and rituxin, and the removal of prednisone would hopefully weaken the remaining cancer cells and boost my immune system enough to fight the cancer.
Another drug that might be introduced if the doctors don't see the desired response with just rituxin would be bortezomib, commercially known as Velcade. I'll go with vVelcade since its easier to say and spell. This drug is fairly new, having been approved by the FDA for use with multiple myeloma back in 2003. My doctor said that this could be a good drug for this situation since Velcade has immune boosting tendencies as well as anti-cancer effects.
Rituxin and Velcade are treatments that are closer on the horizon. Other options such as more chemotherapy, a booster dose of donor stem cells, and some gene therapy treatment that NIH is expecting to begin in the next year are options that could be needed down the line. The boost of donor stem cells wouldn't be a great option right now since the active GVHD that I have would likely get a lot worse with new cells introduced to the body. A more severe GVHD certainly wouldn't be fun to deal with, so the less harmful treatment options will be pursued first, and hopefully my GVHD will start to run its course on its own.
So thats the disappointing news right now. Its certainly not good news, but I don't feel like its the worst my family or I have had to deal with over the last two years. It was mid-September two years ago when I was first diagnosed with lymphoma, so September is really becoming one of my least favorite months. However, after getting the news yesterday I was back at work today, and I'll be heading up to New York to visit Kate's family this weekend. So I'm not making any changes to life quite yet. This news might cause some adjustments to be made sometime in the future, but for right now I'm going to continue living life as normal.
Part of living that normal life involves the Leukemia & Lymphoma Society's Light the Night walk a month from today on October 17th. The team I've set up has raised over 2,000 dollars towards our goal of 5,000. I'm definitely impressed and happy about that number so far! Anybody who wants to join us for the walk or who would like to donate to help the Leukemia & Lymphoma Society are definitely welcome.http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
I definitely want to say thanks to my family and everybody else who has shown their support by donating so far. I'll be sure to keep people updated with whats going on with my journey. Thanks again to everybody who has been sending out their prayers and positive thoughts!
So its an immediate downer to hear that there has been some regrowth, but its positive to know that since I have been having these PET scans so frequently, that this growth is being caught quickly. Of course the next topic of conversation after what exactly is going on is what are we going to do. The doctor outlined some plans that I'll share about in a minute, but the first thing to be done is a needle biopsy of the lymph node. The pathology from that biopsy will hopefully give a good idea of what this latest growth looks like, and a clearer treatment plan can be outlined. Until the results of that biopsy are back though nothing will change.
The regrowth is probably a result of having to continue on immunosuppressants and adding prednisone in order to quell my chronic GVHD symptoms. I was getting great results on previous PET scans which can be attributed to the new immune system fighting the cancer cells. However, the GVHD symptoms were becoming too much to bear, especially the fact that it was impossible for me to swallow without severe pain. While my GVHD symptoms have improved since June, it appears that having to fight the GVHD has stopped the graft versus tumor effect which is key to eliminating all of the disease. Therefore the plan of treatment right now is to aggressively taper me off of the prednisone, while restarting me on one of my immunosuppressants, sirolimus. The doctor explained that sirolimus can have a tumor fighting effect, and I'll have to rely on it to minimalize flareups of the GVHD. I believe tacrolimus, the immunosuppressant I am on now, will be taken off when the sirolimus is reintroduced.
In addition to the changes in medicines relating to the GVHD, the current plan would be to start me on weekly rituxin infusions. Rituxan is a drug that I have taken before as part of my chemotherapy regimen. I didn't have any adverse reactions to it, so I'm not bummed about having to take it. The combination of sirolimus and rituxin, and the removal of prednisone would hopefully weaken the remaining cancer cells and boost my immune system enough to fight the cancer.
Another drug that might be introduced if the doctors don't see the desired response with just rituxin would be bortezomib, commercially known as Velcade. I'll go with vVelcade since its easier to say and spell. This drug is fairly new, having been approved by the FDA for use with multiple myeloma back in 2003. My doctor said that this could be a good drug for this situation since Velcade has immune boosting tendencies as well as anti-cancer effects.
Rituxin and Velcade are treatments that are closer on the horizon. Other options such as more chemotherapy, a booster dose of donor stem cells, and some gene therapy treatment that NIH is expecting to begin in the next year are options that could be needed down the line. The boost of donor stem cells wouldn't be a great option right now since the active GVHD that I have would likely get a lot worse with new cells introduced to the body. A more severe GVHD certainly wouldn't be fun to deal with, so the less harmful treatment options will be pursued first, and hopefully my GVHD will start to run its course on its own.
So thats the disappointing news right now. Its certainly not good news, but I don't feel like its the worst my family or I have had to deal with over the last two years. It was mid-September two years ago when I was first diagnosed with lymphoma, so September is really becoming one of my least favorite months. However, after getting the news yesterday I was back at work today, and I'll be heading up to New York to visit Kate's family this weekend. So I'm not making any changes to life quite yet. This news might cause some adjustments to be made sometime in the future, but for right now I'm going to continue living life as normal.
Part of living that normal life involves the Leukemia & Lymphoma Society's Light the Night walk a month from today on October 17th. The team I've set up has raised over 2,000 dollars towards our goal of 5,000. I'm definitely impressed and happy about that number so far! Anybody who wants to join us for the walk or who would like to donate to help the Leukemia & Lymphoma Society are definitely welcome.http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
I definitely want to say thanks to my family and everybody else who has shown their support by donating so far. I'll be sure to keep people updated with whats going on with my journey. Thanks again to everybody who has been sending out their prayers and positive thoughts!
Thursday, September 10, 2009
September Update
The lack of updating the journal is a good thing, since it means there aren't any new issues to share with everybody. Things are going really well lately, and its hard to complain. This is my fourth week back at work, and things are going very well. I was definitely not this healthy or energetic last spring when I returned to work before the summer break. I currently have as much energy as I've had since at least before the transplant, and possibly going back to before starting this cancer mess.
The GVHD symptoms are fairly under control right now, although the mouth has not completely cleared up. It can still be uncomfortable to eat certain foods, but at least it isn't painful. I had an appointment with the GVHD team yesterday, and they were happy with the progress my skin is making. They want me to continue tapering my prednisone doses, and I'll now be taking it just once every other day. Reducing the prednisone to every other day is a good step in getting me off of the drug, because it can have a lot of long term side effects. However, I'll now have a greater chance of GVHD flareups on the tapered dose. Hopefully, my new immune system is working things out on its own a little better, and my body will handle the reduced prednisone levels.
So next week will be nine months since the transplant, which means I'll have re-staging according to the treatment protocol. On Wednesday I'll have a PET scan and bone marrow biopsy, so prayers for excellent test results will be appreciated!
The GVHD symptoms are fairly under control right now, although the mouth has not completely cleared up. It can still be uncomfortable to eat certain foods, but at least it isn't painful. I had an appointment with the GVHD team yesterday, and they were happy with the progress my skin is making. They want me to continue tapering my prednisone doses, and I'll now be taking it just once every other day. Reducing the prednisone to every other day is a good step in getting me off of the drug, because it can have a lot of long term side effects. However, I'll now have a greater chance of GVHD flareups on the tapered dose. Hopefully, my new immune system is working things out on its own a little better, and my body will handle the reduced prednisone levels.
So next week will be nine months since the transplant, which means I'll have re-staging according to the treatment protocol. On Wednesday I'll have a PET scan and bone marrow biopsy, so prayers for excellent test results will be appreciated!
Thursday, August 20, 2009
No More Microfungin
Well the summer is over for me as I find myself back at school for work this week. Things are going well so far. I've had plenty of energy throughout the day, which was the big issue last spring when I went back. My GVHD symptoms are also under control right now. The rash on my arms and legs faded away and my skin looks very clear. The rest of my skin has improved as well, and there isn't any itching or peeling to worry about right now. Swallowing isn't difficult and the mouth pain and discomfort is under control. So while things aren't quite perfect, I'm not complaining much either.
Since starting the prednisone in the beginning of the summer I've had to visit NIH twice a week for a microfungin injection. I was taking fluconazole as my prophylactic anti-fungal, but apparently it doesn't react well with the level of prednisone I was taking. So the bi-weekly microfungin injection wasn't so bad during the summer when I had nothing to do during the day. Now that I'm back to work it would be a bit more of a disturbance to head across the beltway to NIH twice a week.
So I made it to NIH today and my nurse let me know that my infusion had been put on hold. I also had picked up some prednisone at the pharmacy, and they had a bottle of some other anti-fungal, voriconazole. It turns out that my NP and the GVHD team decided to put me on this new antifungal rather than the microfungin. The reason I hadn't been taking the voriconazole before was that it has adverse reactions with sirolimus. Since I am no longer taking that drug, voriconazole is now an option. So I'm happy that I won't have to head over to NIH twice a week at this point. The less time spent at the hospital, the more free of this disease I feel.
Unfortunately I'll have to head over to NIH tommorow and be late for work in the morning. My tacrolimus dosage was raised when the sirolimus was discontinued, and the blood test which gives the team the tacrolimus level in my system is time sensitive. So its a nuisance to miss time from work during the first week, but I have to remember to be thankful that at least I'm able to work right now. I'll still need to miss work for appointments now and then, but a few hours missed here and there is certainly an improvement over 5 months out of work.
Since starting the prednisone in the beginning of the summer I've had to visit NIH twice a week for a microfungin injection. I was taking fluconazole as my prophylactic anti-fungal, but apparently it doesn't react well with the level of prednisone I was taking. So the bi-weekly microfungin injection wasn't so bad during the summer when I had nothing to do during the day. Now that I'm back to work it would be a bit more of a disturbance to head across the beltway to NIH twice a week.
So I made it to NIH today and my nurse let me know that my infusion had been put on hold. I also had picked up some prednisone at the pharmacy, and they had a bottle of some other anti-fungal, voriconazole. It turns out that my NP and the GVHD team decided to put me on this new antifungal rather than the microfungin. The reason I hadn't been taking the voriconazole before was that it has adverse reactions with sirolimus. Since I am no longer taking that drug, voriconazole is now an option. So I'm happy that I won't have to head over to NIH twice a week at this point. The less time spent at the hospital, the more free of this disease I feel.
Unfortunately I'll have to head over to NIH tommorow and be late for work in the morning. My tacrolimus dosage was raised when the sirolimus was discontinued, and the blood test which gives the team the tacrolimus level in my system is time sensitive. So its a nuisance to miss time from work during the first week, but I have to remember to be thankful that at least I'm able to work right now. I'll still need to miss work for appointments now and then, but a few hours missed here and there is certainly an improvement over 5 months out of work.
Friday, August 7, 2009
No More Sirolimus
Life is good! Can't forget that.
So yesterday I had one of my current bi-weekly visits to NIH for an anti-fungal infusion, and saw the nurse practicioner and another doctor who have been following me. The rash on my arms is looking a lot better, and my lower legs are looking about a week behind what my arms were. The itching is much improved, and it doesn't really bother me much now. The rest of my skin has cleared up a lot, and overall I'm feeling pretty well.
The GHVD in my mouth is about the same, which is to say its tolerable but doesn't really look good at all. With the mouth not quite looking better and the rash still unexplained, they don't want to rush tapering my prednisone. The problem with that decision is that they don't like how long it looks like I will be on the prednisone. It has plenty of negative side effects including deterioration of the bones and cataracts. So a decision was made to alter my immune-suppressant regimen in order to help improve my GVHD symptoms.
I've been taking sirolimus and tacrolimus throughout the whole transplant process starting in December. My doses for those medications have already been tapered to a minimal amount, and the plan would probably have been to take me off of them if the GVHD symptoms had not shown. Sirolimus is a drug that can cause side effects in the mouth, so they decided to remove that drug from my menu! Thats a relief. Any time I can move away from a drug, especially one that I've been with so long, feels like some sort of success.
The flip side of that is that the amount of tacrolimus I take will be increased in order to put my on a more therapeutic level. That will hopefully suppress the immune system enough to help ease the GVHD symptoms. With the tacrolimus pulling more of its weight with the GVHD, then hopefully the prednisone can be tapered at a quicker pace.
So lets hope the plan helps ease the GVHD and I can return closer to "normal." Its good to note that at this point the doctors aren't concerned about an increased level of immune suppressants hindering the graft versus tumor effect. Before the last two PET scans there was a hesitation to increase my immune suppressants because the main goal was, and still is, to eliminate the cancer. At this point the team doesn't feel that higher immune suppressants will have an effect on the cancer remaining in my body. Lets hope so.
So yesterday I had one of my current bi-weekly visits to NIH for an anti-fungal infusion, and saw the nurse practicioner and another doctor who have been following me. The rash on my arms is looking a lot better, and my lower legs are looking about a week behind what my arms were. The itching is much improved, and it doesn't really bother me much now. The rest of my skin has cleared up a lot, and overall I'm feeling pretty well.
The GHVD in my mouth is about the same, which is to say its tolerable but doesn't really look good at all. With the mouth not quite looking better and the rash still unexplained, they don't want to rush tapering my prednisone. The problem with that decision is that they don't like how long it looks like I will be on the prednisone. It has plenty of negative side effects including deterioration of the bones and cataracts. So a decision was made to alter my immune-suppressant regimen in order to help improve my GVHD symptoms.
I've been taking sirolimus and tacrolimus throughout the whole transplant process starting in December. My doses for those medications have already been tapered to a minimal amount, and the plan would probably have been to take me off of them if the GVHD symptoms had not shown. Sirolimus is a drug that can cause side effects in the mouth, so they decided to remove that drug from my menu! Thats a relief. Any time I can move away from a drug, especially one that I've been with so long, feels like some sort of success.
The flip side of that is that the amount of tacrolimus I take will be increased in order to put my on a more therapeutic level. That will hopefully suppress the immune system enough to help ease the GVHD symptoms. With the tacrolimus pulling more of its weight with the GVHD, then hopefully the prednisone can be tapered at a quicker pace.
So lets hope the plan helps ease the GVHD and I can return closer to "normal." Its good to note that at this point the doctors aren't concerned about an increased level of immune suppressants hindering the graft versus tumor effect. Before the last two PET scans there was a hesitation to increase my immune suppressants because the main goal was, and still is, to eliminate the cancer. At this point the team doesn't feel that higher immune suppressants will have an effect on the cancer remaining in my body. Lets hope so.
Friday, July 31, 2009
Stopped Counting Days...7+ Months Out
Been a while since I've updated here, and I haven't intended to go so long without an update. I guess watching Isaiah and making hospital visits during the summer has been enough to keep me from updating my blog. The biggest thing going on is that I had another PET scan last Friday and the results were stable to slightly improved again. The cancer remaining is described as minimal by the doctors, but I'm always eager to hear that there is no cancer at all. I'm not there yet, but things continue to go in the right direction.
While the cancer cells are disappearing, the new immune system continues to cause issues with GVHD. Since starting Prednisone at the beginning of the summer, I am doing much better. I have gained back the weight I lost when I couldn't swallow, and my appetite is pretty decent. My throat has slowly improved and doesn't bother me on most days. It isn't normal, but I can finish a meal in a reasonable amount of time and without pain now.
I continue to have ulcers in my mouth, but my sensitivity to different types of foods has improved. I joined a new clinical study for a topical thalidomide gel applied directly to the ulcers in my mouth. A lot of the doctors at NIH were eager to see how I did on the study, but the mouth pain didn't improve and I was taken off of the study after just a week. I had a bit of a flair up with the mouth pain after that week, but things have calmed since then.
I had a follow-up appointment with the opthamologist last week, and he saw no signs of the scar tissue he had seen the previous month. That was great news to hear. My skin rashes had been improving for the most part on the Prednisone, although last week I developed a new rash. On my forearms I started getting very irritated looking bumps. Over a few days the bumps increased in quantity and size. I had a small group of doctors including the dermatologist who has been following me stumped as to what it could be. On Wednesday I had a skin biopsy and a skin exam with the dermatologist, and he shared that it is probably just another presentation of GVHD. He said what it looks like I have now looks like hives, which is more rare for GVHD, but he can't find another way to explain it. Its a crappy experience to leave your doctors clueless, but this doesn't appear to be anything too serious. It itches more than the other rashes I've had, but it seems to be clearing up somewhat in my uninformed view.
So thats where I am medically. The cancer isn't quite gone and the GVHD is better but still bothersome at times. My energy level isn't what it was like before cancer, but its improving. I had a meeting at work today, and it will be exciting to get back to work in less than a month.
Returning to school means that summer is on its way out, which brings me to something going on this fall. The Leukemia & Lymphoma Society has an annual event called Light the Night. Its a fundraiser for their organization and I've decided to start a fundraising team that will participate in their walk in downtown DC the night of October 17th. It would be great if anybody would like to join my family for the walk and decided to fundraise on their own. Anybody who doesn't want to fundraise or walk could also make donations through one of my family members or I through the webpage for our team.
http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
I'll keep people updated with the progress of the team's fundraising, and if there are any opportunities for people to get involved.
While the cancer cells are disappearing, the new immune system continues to cause issues with GVHD. Since starting Prednisone at the beginning of the summer, I am doing much better. I have gained back the weight I lost when I couldn't swallow, and my appetite is pretty decent. My throat has slowly improved and doesn't bother me on most days. It isn't normal, but I can finish a meal in a reasonable amount of time and without pain now.
I continue to have ulcers in my mouth, but my sensitivity to different types of foods has improved. I joined a new clinical study for a topical thalidomide gel applied directly to the ulcers in my mouth. A lot of the doctors at NIH were eager to see how I did on the study, but the mouth pain didn't improve and I was taken off of the study after just a week. I had a bit of a flair up with the mouth pain after that week, but things have calmed since then.
I had a follow-up appointment with the opthamologist last week, and he saw no signs of the scar tissue he had seen the previous month. That was great news to hear. My skin rashes had been improving for the most part on the Prednisone, although last week I developed a new rash. On my forearms I started getting very irritated looking bumps. Over a few days the bumps increased in quantity and size. I had a small group of doctors including the dermatologist who has been following me stumped as to what it could be. On Wednesday I had a skin biopsy and a skin exam with the dermatologist, and he shared that it is probably just another presentation of GVHD. He said what it looks like I have now looks like hives, which is more rare for GVHD, but he can't find another way to explain it. Its a crappy experience to leave your doctors clueless, but this doesn't appear to be anything too serious. It itches more than the other rashes I've had, but it seems to be clearing up somewhat in my uninformed view.
So thats where I am medically. The cancer isn't quite gone and the GVHD is better but still bothersome at times. My energy level isn't what it was like before cancer, but its improving. I had a meeting at work today, and it will be exciting to get back to work in less than a month.
Returning to school means that summer is on its way out, which brings me to something going on this fall. The Leukemia & Lymphoma Society has an annual event called Light the Night. Its a fundraiser for their organization and I've decided to start a fundraising team that will participate in their walk in downtown DC the night of October 17th. It would be great if anybody would like to join my family for the walk and decided to fundraise on their own. Anybody who doesn't want to fundraise or walk could also make donations through one of my family members or I through the webpage for our team.
http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer
I'll keep people updated with the progress of the team's fundraising, and if there are any opportunities for people to get involved.
Friday, July 3, 2009
Day +197
Having cancer has made it very easy to remember my haircuts. There haven't been many over the last two years, and today Kate gave me a trim with the clippers. My hair has been growing well, just not in all areas. The flaky, dry skin on my head hasn't been conducive to growing hair, and I've looked somewhat crazy lately. I had a balding pattern going on with long hairs that refused to do anything but stand straight up on my head. Now it is shorter, not quite bald, and hopefully it will start coming in a little better.
Over the last week it has felt good knowing the tumor has shrunk. I've been feeling pretty good with the prednisone as well until Tuesday night. My mouth became very sensitive to the texture of food, and I've had a flare up of the GVHD in my mouth. The last two days I've had new sores in my mouth, especially on the tongue. This makes eating and talking uncomfortable, which is especially a nuisance with Kate and I's anniversary today and the 4th of July tommorow. A nice dinner to celebrate four years would have been nice, but I think we will put that off until my mouth is ready to enjoy nice food.
Since the prednisone has been improving my symptoms pretty smoothly, the plan was to taper my dosage again. However, the flare up in the mouth led the doctor I saw today to keep me at the levels I am currently on. Its a little disappointing that I've had a bit of a setback with the symptoms, but this is all just part of what I have to deal with. Mouth pain aside, the rest of my symptoms haven't regressed and I am feeling pretty good overall. I'll make the best of this weekend, and I hope everybody else has a great Independence Day weekend as well!
Over the last week it has felt good knowing the tumor has shrunk. I've been feeling pretty good with the prednisone as well until Tuesday night. My mouth became very sensitive to the texture of food, and I've had a flare up of the GVHD in my mouth. The last two days I've had new sores in my mouth, especially on the tongue. This makes eating and talking uncomfortable, which is especially a nuisance with Kate and I's anniversary today and the 4th of July tommorow. A nice dinner to celebrate four years would have been nice, but I think we will put that off until my mouth is ready to enjoy nice food.
Since the prednisone has been improving my symptoms pretty smoothly, the plan was to taper my dosage again. However, the flare up in the mouth led the doctor I saw today to keep me at the levels I am currently on. Its a little disappointing that I've had a bit of a setback with the symptoms, but this is all just part of what I have to deal with. Mouth pain aside, the rest of my symptoms haven't regressed and I am feeling pretty good overall. I'll make the best of this weekend, and I hope everybody else has a great Independence Day weekend as well!
Friday, June 26, 2009
Day +189
Summer vacation is here for a school employee like me, which meant plenty of time this week to visit NIH. I've put in full days there each of the last three days, and will head over to Bethesda tommorrow for a quicker visit. I've entered a new study at NIH that is not therapeutic, but involves tests in order to collect data on chronic GVHD. I've visited a slew of disciplines for this, including dermatology, dental, opthamology, and more.
I've visited the skin and mouth doctors plenty of times in recent months, and there isn't much going on there. Both of those areas have improved with the introduction of prednisone recently, so that is a positive. The opthamologist was happy with everything he saw until he got to the final part of his GVHD examination. He flipped back the upper eye lid and noticed some scar tissue on the inside of the lid. He felt that this could have explained the runny eyes and crustiness that I had recently. While the prednisone has cleaned up those eye issues, he was still concerned that the scar tissue there could have a negative effect on the eyeball. He prescribed me some eye drops as well as a steroid ointment for the eyes. I'm not happy about having to medicate my eyes, but at least this might prevent a more serious future problem. This makes me thankful that I chose to participate in this study.
So the prednisone is slowly easing the discomfort and pain of the GVHD, and this study is helpful because there are a lot of talented doctors weighing in on how to best treat this issue. Meanwhile the cancer is still there and my family is praying and hoping for that to improve. Today was another PET scan and like always its a big deal to hear what the results are. The meeting to discuss my situation was scheduled for 3:00, but it was closer to 4:00 by the time it got started. We have learned that waiting for the results hasn't been a good sign, so that raises the anxiety. My dad was the only person with me at the meeting, which was probably a good thing. Kate and my mom would have been stressing having to wait that long to hear the results.
The lead transplant doctor and several other familiar medical faces were there for the meeting. He looked exhausted and stated in a beat-up voice, "The scan showed significant improvement." It was great news to hear but the voice he said it in was somewhat depressing. One of the nurses and another doctor kind of gave each other an odd look when they heard him give such positive news in that type of voice. My Dad appeared to match the doctor's emotions and seemed ready to take in some more worrisome news. However, hearing "significant improvement," no matter what the delivery was like, was an immediate great feeling. The doctor explained that the previous spots near the tumor had all disappeared on this scan! Great news. He also stated that the size and the intensity of the tumor had significantly decreased as well. EVEN BETTER NEWS! There was a spot on the sternum that lit up on the PET, although it was barely measurable. He had no explanation for that, but was unconcerned about it considering how much the tumor mass had responded.
So while the phrase "No Evidence of Disease" has not been mentioned, this is still a great result. My new immune system is doing its job quite well! Since the transplant I have had a PET scan every month in order to closely monitor the tumor site. PET scans this frequently definitely aren't commonplace, but this was the doctor's decision considering how quickly I relapsed last year after experiencing a full remission. It was a positive sign today that he felt it wasn't necessary to have a PET scan next month. He was willing to wait a longer period of time before the next scan, which is always a milestone for a cancer survivor. I decided to go ahead and have a scan in a month anyways just to be on the safe side in monitoring the cancer. However, its an amazing feeling to know that enough progress has been made that the doctor is willing to increase the amount of time between scans.
So I remain on the prednisone and I am taking other topical steroids in order to control the GVHD. Its not a pleasant deal at all, but there is some sort of satisfaction in worrying more about this than the cancer. I'll continue to visit NIH a couple of times a week most likely through the summer. However, I am hoping that when work resumes in the middle of August that I'll be healthy enough to put a lot of my current struggles behind me.
I've visited the skin and mouth doctors plenty of times in recent months, and there isn't much going on there. Both of those areas have improved with the introduction of prednisone recently, so that is a positive. The opthamologist was happy with everything he saw until he got to the final part of his GVHD examination. He flipped back the upper eye lid and noticed some scar tissue on the inside of the lid. He felt that this could have explained the runny eyes and crustiness that I had recently. While the prednisone has cleaned up those eye issues, he was still concerned that the scar tissue there could have a negative effect on the eyeball. He prescribed me some eye drops as well as a steroid ointment for the eyes. I'm not happy about having to medicate my eyes, but at least this might prevent a more serious future problem. This makes me thankful that I chose to participate in this study.
So the prednisone is slowly easing the discomfort and pain of the GVHD, and this study is helpful because there are a lot of talented doctors weighing in on how to best treat this issue. Meanwhile the cancer is still there and my family is praying and hoping for that to improve. Today was another PET scan and like always its a big deal to hear what the results are. The meeting to discuss my situation was scheduled for 3:00, but it was closer to 4:00 by the time it got started. We have learned that waiting for the results hasn't been a good sign, so that raises the anxiety. My dad was the only person with me at the meeting, which was probably a good thing. Kate and my mom would have been stressing having to wait that long to hear the results.
The lead transplant doctor and several other familiar medical faces were there for the meeting. He looked exhausted and stated in a beat-up voice, "The scan showed significant improvement." It was great news to hear but the voice he said it in was somewhat depressing. One of the nurses and another doctor kind of gave each other an odd look when they heard him give such positive news in that type of voice. My Dad appeared to match the doctor's emotions and seemed ready to take in some more worrisome news. However, hearing "significant improvement," no matter what the delivery was like, was an immediate great feeling. The doctor explained that the previous spots near the tumor had all disappeared on this scan! Great news. He also stated that the size and the intensity of the tumor had significantly decreased as well. EVEN BETTER NEWS! There was a spot on the sternum that lit up on the PET, although it was barely measurable. He had no explanation for that, but was unconcerned about it considering how much the tumor mass had responded.
So while the phrase "No Evidence of Disease" has not been mentioned, this is still a great result. My new immune system is doing its job quite well! Since the transplant I have had a PET scan every month in order to closely monitor the tumor site. PET scans this frequently definitely aren't commonplace, but this was the doctor's decision considering how quickly I relapsed last year after experiencing a full remission. It was a positive sign today that he felt it wasn't necessary to have a PET scan next month. He was willing to wait a longer period of time before the next scan, which is always a milestone for a cancer survivor. I decided to go ahead and have a scan in a month anyways just to be on the safe side in monitoring the cancer. However, its an amazing feeling to know that enough progress has been made that the doctor is willing to increase the amount of time between scans.
So I remain on the prednisone and I am taking other topical steroids in order to control the GVHD. Its not a pleasant deal at all, but there is some sort of satisfaction in worrying more about this than the cancer. I'll continue to visit NIH a couple of times a week most likely through the summer. However, I am hoping that when work resumes in the middle of August that I'll be healthy enough to put a lot of my current struggles behind me.
Wednesday, June 17, 2009
Day +181
Today is June 17th, which means I am six months out from the bone marrow transplant. I try to take things one day at a time in life, especially when thinking of the cancer. Therefore I didn't really have many expectations for what it would be like at this point when I was back in the hospital receiving the new cells. However, there were some things that I was hoping for. I haven't gotten the news that I'm free of the cancer yet, which is a bit disappointing, but I haven't received any negative news about the cancer either. I don't think I fully appreciated at the time how long this process would be. I was obviously hoping that I wouldn't have a big problem with GVHD, and I felt I was doing great for a few months. While I missed the acute GVHD right after the transplant, the chronic GVHD has been a recent pain in the butt. I don't know if I had any other goals, but one things I really wanted to do was to get back to work before the end of the school year. Today was the last day of work for the summer, and I thankfully put in about a month of work before the year ended.
So while I didn't quite know what this time would bring me, I have to say that things are pretty positive right now. Bad health is something that I feared before my cancer diagnosis, but I've realized that I can handle the physical problems pretty well. There were some times that I was truly exhausted, sick, or in pain, but these are things that I've been able to handle...especially with Isaiah and Kate helping me along the way. Missing so much work wasn't fun, but the biggest positive taken away from that was a lot of time spent with Isaiah and Kate. Family time, even under less than ideal circumstances, can be as good as it gets.
Moving on from the reminiscing, I celebrated six months with nothing less than a trip to NIH. I saw the dermatologist, who was happy with the progress since the prednisone began. I am also starting a new protocol that will involve some tests to help document what my GHVD symptoms are. For this study they took a couple of skin biopsies today. It was a pretty easy visit overall.
Tommorrow I will head back to NIH for a busy day. I'll meet with the transplant team in the morning for them to check on my progress. They will decide then how I will continue with the prednisone dosing. With the progress I am making they might decide to taper the dosage to every other day. After meeting with them I'll have a dental visit for another study that I'll be starting. This one involves a thalidomide gel to help with ulcers in my mouth. The prednisone has helped my mouth since I started it, but there is still room to improve. This might help out as well, or I could end up on a placebo. Either way it shouldn't hurt.
In the afternoon I will take part in a swallowing test which will give the doctors an idea about how my throat is affecting my ability to swallow. Supposedly this involved some eggs with some traceable isotope in it. Sounds delicious. Following that I'll have to inhale pentamidime, which is the prophylactic for preventing pneumonia. So tommorow will be another busy day, but it feels like business as usual. I'm still a regular around NIH at six months, but that was to be expected. Hopefully it is just the beginning of another successful six months on the long road of life.
So while I didn't quite know what this time would bring me, I have to say that things are pretty positive right now. Bad health is something that I feared before my cancer diagnosis, but I've realized that I can handle the physical problems pretty well. There were some times that I was truly exhausted, sick, or in pain, but these are things that I've been able to handle...especially with Isaiah and Kate helping me along the way. Missing so much work wasn't fun, but the biggest positive taken away from that was a lot of time spent with Isaiah and Kate. Family time, even under less than ideal circumstances, can be as good as it gets.
Moving on from the reminiscing, I celebrated six months with nothing less than a trip to NIH. I saw the dermatologist, who was happy with the progress since the prednisone began. I am also starting a new protocol that will involve some tests to help document what my GHVD symptoms are. For this study they took a couple of skin biopsies today. It was a pretty easy visit overall.
Tommorrow I will head back to NIH for a busy day. I'll meet with the transplant team in the morning for them to check on my progress. They will decide then how I will continue with the prednisone dosing. With the progress I am making they might decide to taper the dosage to every other day. After meeting with them I'll have a dental visit for another study that I'll be starting. This one involves a thalidomide gel to help with ulcers in my mouth. The prednisone has helped my mouth since I started it, but there is still room to improve. This might help out as well, or I could end up on a placebo. Either way it shouldn't hurt.
In the afternoon I will take part in a swallowing test which will give the doctors an idea about how my throat is affecting my ability to swallow. Supposedly this involved some eggs with some traceable isotope in it. Sounds delicious. Following that I'll have to inhale pentamidime, which is the prophylactic for preventing pneumonia. So tommorow will be another busy day, but it feels like business as usual. I'm still a regular around NIH at six months, but that was to be expected. Hopefully it is just the beginning of another successful six months on the long road of life.
Sunday, June 14, 2009
Day +178
After my appointment last Tuesday, I returned to NIH on Friday for the doctors to check on my GVHD symptoms and discuss the next step in treatment. My Dad was able to come to the meeting as well, with some questions he had for the doctors. The meeting was in the afternoon and I was pretty exhausted at that point. My fatigue seemed to be getting worse the previous few days, and my mouth was irritating me as much as ever. Not only was I still having trouble swallowing, but I was developing sores on the top of my tongue that made putting anything in my mouth, even room temperature water, uncomfortable.
So the nurse practicioner I saw on Tuesday initially thought I looked worse when she saw me Friday. She had me weighed and I had lost two and a half pounds in the three days since my last visit. This is my lowest weight since I was first diagnosed back in September 2007. In the last three weeks I lost thirteen pounds, which is more than a pound every two days. I think its safe to say I wasn't heading down a healthy path.
When the doctor saw that I wasn't rebounding in the last few days he decided it was trime to start the systemic treatment with Prednisone. I was prepared for this and it was a relief to know that I would be getting some relief. My father asked about losing the graft versus tumor effect when starting the Prednisone, which was a concern of mine as well. The doctor explained that statistics show an improvement in graft versus tumor effect with mild GVHD, but that there is no correlation between greater graft versus tumor effect and more severe GVHD. Since I have already had the minor GVHD symptoms, his thought was that I likely already received as much of the graft versus tumor help as I can get. This was a relief to my father and I to hear, and made it clear that there really would be no reason to not start the Prednisone treatment at this time.
My father brought up his thought that more tumor-fighting techniques could be used to help eliminate the tumor because of its tough nature and the aggressiveness with which it came back last year. He brought up the idea of radiation with the doctor, who did not rule that out as a possibility in the future. Most patients who have a mediastinal lymphoma receive radiation after their initial chemotherapy. I did not receive this after chemotherapy because the original study I was in was testing if the therapy I was given would eliminate the need for radiation. The idea of radiation certainly isn't pleasing, but there are plenty of people who have been through it and are doing well. If that is something I need to have done in order to improve my chances of living cancer free, then it would be worthwhile. For now the doctor wants to focus on improving my GVHD symptoms, and possibly thinking about radiation further down the line after some more scans.
So in addition to the Prednisone the doctors gave me some morphine to help with the pain of swallowing and some encouragement to keep nourishing myself despite the discomfort. I started the Prednisone Friday evening, so while I write this I have only taken three doses of it. Its pretty encouraging though that Kate has already noticed an improvement in how I appear to feel. I feel its made a big difference already as well. The most obvious sign that I've noticed is that my skin rash looks better. I had a rash on the back of my hands that were raised purplish/reddish bumps, and those are barely noticeable now. My throat feels better although it is still uncomfortable and occasionally painful to swallow. Taking the morphine before meals seems to help a little bit. My fatigue has also seemed to improve, although some of that might be explained by the energy boost that Prednisone tends to give you.
So I will be interested to see how I feel as I continue to take the Prednisone. Returning to a more normal state would be great, and keeping the GVHD from giving me further problems is the most important issue right now.
So the nurse practicioner I saw on Tuesday initially thought I looked worse when she saw me Friday. She had me weighed and I had lost two and a half pounds in the three days since my last visit. This is my lowest weight since I was first diagnosed back in September 2007. In the last three weeks I lost thirteen pounds, which is more than a pound every two days. I think its safe to say I wasn't heading down a healthy path.
When the doctor saw that I wasn't rebounding in the last few days he decided it was trime to start the systemic treatment with Prednisone. I was prepared for this and it was a relief to know that I would be getting some relief. My father asked about losing the graft versus tumor effect when starting the Prednisone, which was a concern of mine as well. The doctor explained that statistics show an improvement in graft versus tumor effect with mild GVHD, but that there is no correlation between greater graft versus tumor effect and more severe GVHD. Since I have already had the minor GVHD symptoms, his thought was that I likely already received as much of the graft versus tumor help as I can get. This was a relief to my father and I to hear, and made it clear that there really would be no reason to not start the Prednisone treatment at this time.
My father brought up his thought that more tumor-fighting techniques could be used to help eliminate the tumor because of its tough nature and the aggressiveness with which it came back last year. He brought up the idea of radiation with the doctor, who did not rule that out as a possibility in the future. Most patients who have a mediastinal lymphoma receive radiation after their initial chemotherapy. I did not receive this after chemotherapy because the original study I was in was testing if the therapy I was given would eliminate the need for radiation. The idea of radiation certainly isn't pleasing, but there are plenty of people who have been through it and are doing well. If that is something I need to have done in order to improve my chances of living cancer free, then it would be worthwhile. For now the doctor wants to focus on improving my GVHD symptoms, and possibly thinking about radiation further down the line after some more scans.
So in addition to the Prednisone the doctors gave me some morphine to help with the pain of swallowing and some encouragement to keep nourishing myself despite the discomfort. I started the Prednisone Friday evening, so while I write this I have only taken three doses of it. Its pretty encouraging though that Kate has already noticed an improvement in how I appear to feel. I feel its made a big difference already as well. The most obvious sign that I've noticed is that my skin rash looks better. I had a rash on the back of my hands that were raised purplish/reddish bumps, and those are barely noticeable now. My throat feels better although it is still uncomfortable and occasionally painful to swallow. Taking the morphine before meals seems to help a little bit. My fatigue has also seemed to improve, although some of that might be explained by the energy boost that Prednisone tends to give you.
So I will be interested to see how I feel as I continue to take the Prednisone. Returning to a more normal state would be great, and keeping the GVHD from giving me further problems is the most important issue right now.
Tuesday, June 9, 2009
Day +173
I continue to work and this past Friday was the first payday since I've been back. The check came in the mail with a whopping $13.73 made out in my name! Well...it was only two days worth of work, so it wasn't quite a full paycheck. However, even when I am receiving my full pay checks, they will not be their usual amounts for a while. When I took medical leave in December, I elected to continue with our health insurance through work so Isaiah and Kate would still be covered. The options we were given were to either pay as we go or to incur a debt. Since we would be short on money for other bills anyways, we decided to incur the debt, which would then be deducted when I started receiving pay again. About six months of health insurance premiums is a good amount of money, so the debt won't be paid off right away. I was expecting the full amount of my pay check to go towards the debt, but I guess somebody felt I needed that thirteen dollars for something. I'll have to check with payroll about how long it will take to pay off the health insurance debt, but finances are still an issue despite being back to work. At least I can take solace in knowing that avoiding the insurance system and getting my care at NIH has helped our family immensely when it comes to money.
On to the health stuff, I was given an antibiotic last week for a bacterial infection, and it seemed to clear up my congestion pretty well. The members of the team I met with last week were hopeful that when that cleared up that my swallowing might improve, but that wasn't to be. My throat feels a little better, but it is still painful to swallow. I lost another four pounds this week, so I'm still having a hard time with eating. The GVHD on my skin and in my mouth has been pretty stable though. Any changes with those have been pretty minor. However, the GVHD has been getting worse below the belt. I met with a couple of infectious disease doctors today who shared that the problems there aren't the results of any infections. One of the doctors from the transplant team took a look at what is going on and stated that it looked like GVHD. Dermatology has been trying to help me out with that, but nothing seems to be solving the issue.
This doctor from the transplant team seems to feel pretty strongly that its time to put me on prednisone. This would be the systemic steroid that would clear up the GVHD symptoms relatively quickly. He explained that my GVHD isn't serious at this point, but that he doesn't like where its heading. I'd be relieved to start the prednisone and to have these symptoms improve. However, the prednisone would decrease the potential graft versus tumor effect, and there is a small fear in the back of my head that it might be best to hold off on it longer. However, I also might be fine and no growth would occur if I started prednisone now. Its impossible to know what will happen with cancer. Right now though the improvement in quality of living would definitely be welcomed.
On to the health stuff, I was given an antibiotic last week for a bacterial infection, and it seemed to clear up my congestion pretty well. The members of the team I met with last week were hopeful that when that cleared up that my swallowing might improve, but that wasn't to be. My throat feels a little better, but it is still painful to swallow. I lost another four pounds this week, so I'm still having a hard time with eating. The GVHD on my skin and in my mouth has been pretty stable though. Any changes with those have been pretty minor. However, the GVHD has been getting worse below the belt. I met with a couple of infectious disease doctors today who shared that the problems there aren't the results of any infections. One of the doctors from the transplant team took a look at what is going on and stated that it looked like GVHD. Dermatology has been trying to help me out with that, but nothing seems to be solving the issue.
This doctor from the transplant team seems to feel pretty strongly that its time to put me on prednisone. This would be the systemic steroid that would clear up the GVHD symptoms relatively quickly. He explained that my GVHD isn't serious at this point, but that he doesn't like where its heading. I'd be relieved to start the prednisone and to have these symptoms improve. However, the prednisone would decrease the potential graft versus tumor effect, and there is a small fear in the back of my head that it might be best to hold off on it longer. However, I also might be fine and no growth would occur if I started prednisone now. Its impossible to know what will happen with cancer. Right now though the improvement in quality of living would definitely be welcomed.
Tuesday, June 2, 2009
Day +166
I had a clinic visit and a dermatology appointment today at NIH. I met with one of the team's nurse practicioners who I've met several times before but haven't worked too closely with. She took down a pretty complete account of my GVHD symptoms so far. It seems like I'll be in contact with her more as I try to manage my symptoms.
After my initial meeting with her I went to my dermatology appointment. Aside from some itching on my scalp, my skin doesn't really bother me. However, the rash is easy to spot visually, especially on my face. It is still present in all of the original spots, face, neck, shoulders, and chest, but has also spread along my arms, hands, inside of my ankles, and the groin. The dermatologist had pictures taken to document how things are now, and made a slight change to the treatment. I have been taking steroid ointments and creams of varying strengths for different parts of my body. He still wants me to use the strongest steroid for my scalp and most of my body, but switched me to a non-steroid anti-inflammatory for my groin and face. He wanted me to focus a bit more around my eyes, but was worried about having the steroids near them. So I'll continue to apply creams every day, and hopefuly there will be some progress.
After that appointment I went back to the clinic and met with the nurse practicioner and another transplant doctor who I had yet to meet. The reason I have yet to meet with her is that she works with transplants for children. She expressed what other doctors have to me recently, that the condition of my GVHD would probably warrant a systemic steroid if it weren't for the fact that I'm not in complete remission. She stated that there are plenty more options for non-systemic treatment that they could try as well. One idea that stood out is an Ultra Violet treatment for my skin. Apparently sun exposure isn't good for GVHD, but controlled UV light can really help things out. She said that there are some places that even use the UV exposure for the mouth. One of the reasons why I probably haven't heard of this before is that NIH doesn't offer it to patients. However, she said there are several local hospitals that do, including Washington Hospital Center, which is convenient for us. The UV treatment is something that she will discuss with the transplant team.
Since my main complaint right now is swallowing, the nurse practicioner thought that a consult with the GI team might be helpful. She said that GVHD can affect the esophagus by creating webbings from the esophageal tissue. This might be part of the reason why I'm having trouble swallowing, and have some of the discomfort and pain. She wanted them to perform an endoscopy, which would give them an idea if there is any GVHD involvement further down the digestive track. If there were webbing in the esophagus, it would be cleared out when the endoscope moves down the esophagus. That sounds pleasant!
One of the other issues right now is that a culture taken last Thursday shows I have a bacterial infection. I've had some congestion in the throat for about a week, and I don't know how long I've had the infection. I haven't had any fevers, so that was a warning sign that didn't pop up. This infection affects the sinuses and upper respiratory system, so it was explained to me that this might explain some of the problems in my throat. I was prescribed an antibiotic for five days to clear the infection, and that is the only major change in treatment for now. The doctors want to see how I respond on the antibiotics before any other changes are made. So hopefully the GVHD subsides a bit when this infection gets treated.
After my initial meeting with her I went to my dermatology appointment. Aside from some itching on my scalp, my skin doesn't really bother me. However, the rash is easy to spot visually, especially on my face. It is still present in all of the original spots, face, neck, shoulders, and chest, but has also spread along my arms, hands, inside of my ankles, and the groin. The dermatologist had pictures taken to document how things are now, and made a slight change to the treatment. I have been taking steroid ointments and creams of varying strengths for different parts of my body. He still wants me to use the strongest steroid for my scalp and most of my body, but switched me to a non-steroid anti-inflammatory for my groin and face. He wanted me to focus a bit more around my eyes, but was worried about having the steroids near them. So I'll continue to apply creams every day, and hopefuly there will be some progress.
After that appointment I went back to the clinic and met with the nurse practicioner and another transplant doctor who I had yet to meet. The reason I have yet to meet with her is that she works with transplants for children. She expressed what other doctors have to me recently, that the condition of my GVHD would probably warrant a systemic steroid if it weren't for the fact that I'm not in complete remission. She stated that there are plenty more options for non-systemic treatment that they could try as well. One idea that stood out is an Ultra Violet treatment for my skin. Apparently sun exposure isn't good for GVHD, but controlled UV light can really help things out. She said that there are some places that even use the UV exposure for the mouth. One of the reasons why I probably haven't heard of this before is that NIH doesn't offer it to patients. However, she said there are several local hospitals that do, including Washington Hospital Center, which is convenient for us. The UV treatment is something that she will discuss with the transplant team.
Since my main complaint right now is swallowing, the nurse practicioner thought that a consult with the GI team might be helpful. She said that GVHD can affect the esophagus by creating webbings from the esophageal tissue. This might be part of the reason why I'm having trouble swallowing, and have some of the discomfort and pain. She wanted them to perform an endoscopy, which would give them an idea if there is any GVHD involvement further down the digestive track. If there were webbing in the esophagus, it would be cleared out when the endoscope moves down the esophagus. That sounds pleasant!
One of the other issues right now is that a culture taken last Thursday shows I have a bacterial infection. I've had some congestion in the throat for about a week, and I don't know how long I've had the infection. I haven't had any fevers, so that was a warning sign that didn't pop up. This infection affects the sinuses and upper respiratory system, so it was explained to me that this might explain some of the problems in my throat. I was prescribed an antibiotic for five days to clear the infection, and that is the only major change in treatment for now. The doctors want to see how I respond on the antibiotics before any other changes are made. So hopefully the GVHD subsides a bit when this infection gets treated.
Thursday, May 28, 2009
Day +161
I had a two week break from my regular Thursday appointments but I was back at NIH today. I'm not feeling bad, but I wouldn't say I'm doing great the last few days either. The skin GVHD doesn't bother me, and most of my mouth feels better than before. However, I have had a lot of discomfort swallowing, and it definitely makes eating a chore rather than something to be enjoyed. When I weighed in today I had lost five pounds since my weight was last measured three weeks ago. I guess that confirms that the GVHD is affecting how much I eat.
In addition to those two GVHD issues, over the last couple of days I've dealt with some gas, constipation, and other below the belt issues that I'm not certain everybody wants to hear the details about. This might mean a more systemic approach to treating my GVHD is in my future, which of course would reduce the Graft Versus Tumor effect that we want to continue. The doctors still want to treat my GVHD symptoms topically, but I don't know when they would make the decision to change the course of treatment.
So with my swallowing issues I was sent to the Ear, Nose, and Throat specialist. After going over all of my issues again, the doc numbed my nose and throat and stuck the thin camera up my nose and down to look at my throat. She commented that my throat looked better than my mouth and that she didn't see any signs of infection. However, she explained that the mouth and the throat are pretty much the same system, but just at different stages. Since the GVHD in my mouth is so severe. it wouldn't surprise her if it gets worse in my throat. GREAT! So she stated what I've been told before, to keep a very bland diet. Room temperature...nothing acidic, nothing carbonated, nothing spicy. Basically...not much fun for somebody who loves food like I do.
So next week I'll head into NIH on Tuesday to meet with a nurse practicioner who works closely with those who have GVHD. I'll probably work a dermatology appointment that day before coming back to have a dental appointment on Thursday. I got a good break from NIH with the Wisconsin trip, but the GVHD is forcing me to stay close to NIH. Its definitely annoying to continue having medical issues, but GVHD is temporary and also a whole lot better than cancer. I'm not always comfortable but I'm in good spirits.
In addition to those two GVHD issues, over the last couple of days I've dealt with some gas, constipation, and other below the belt issues that I'm not certain everybody wants to hear the details about. This might mean a more systemic approach to treating my GVHD is in my future, which of course would reduce the Graft Versus Tumor effect that we want to continue. The doctors still want to treat my GVHD symptoms topically, but I don't know when they would make the decision to change the course of treatment.
So with my swallowing issues I was sent to the Ear, Nose, and Throat specialist. After going over all of my issues again, the doc numbed my nose and throat and stuck the thin camera up my nose and down to look at my throat. She commented that my throat looked better than my mouth and that she didn't see any signs of infection. However, she explained that the mouth and the throat are pretty much the same system, but just at different stages. Since the GVHD in my mouth is so severe. it wouldn't surprise her if it gets worse in my throat. GREAT! So she stated what I've been told before, to keep a very bland diet. Room temperature...nothing acidic, nothing carbonated, nothing spicy. Basically...not much fun for somebody who loves food like I do.
So next week I'll head into NIH on Tuesday to meet with a nurse practicioner who works closely with those who have GVHD. I'll probably work a dermatology appointment that day before coming back to have a dental appointment on Thursday. I got a good break from NIH with the Wisconsin trip, but the GVHD is forcing me to stay close to NIH. Its definitely annoying to continue having medical issues, but GVHD is temporary and also a whole lot better than cancer. I'm not always comfortable but I'm in good spirits.
Saturday, May 23, 2009
Day +155
Happy PET scans always make for good days!
I had another uneventful PET scan experience, and the doctor from the transplant team was quick to announce that the scan showed good results. He let us know that the tumor mass is stable to improving. Doctors tend to be conservative when speaking about cancer, and he admitted that calling things stable was conservative. Most likely the tumor area is slowly improving, which is what we were expecting.
After the last scan he reported that there were some areas in the lung that showed up in the PET, that were most likely caused by the bout of Pneumonia I had earlier in the year. On today's scan one of those spots had completely disappeared. Supposedly the radiologist who was viewing the PET with him asked if I had a recent infection without knowing my history. The other spots in the lung were again...stable to slightly improved. He felt very confident that those spots in the lungs were just showing inflammation and that the infection was lingering.
So the bottom line is that I am not cancer free, but that what is there is only minimal. Every scan without an increase in cancer activity marks progress. Without today's news the doctor wants me to consider to stay on my current regimen of immune suppressants. If I had no signs of cancer, the plan would be to put me on more immune suppressants to treat my GVHD. However, with the way things are now, I just have to deal with the GVHD and hope that there is also a Graft Versus Tumor effect occurring.
I'd be happy to not deal with the GVHD symptoms, but its better to live with them and without cancer. Thanks for all of the support, and I hope everybody enjoys their Memorial Day weekend.
I had another uneventful PET scan experience, and the doctor from the transplant team was quick to announce that the scan showed good results. He let us know that the tumor mass is stable to improving. Doctors tend to be conservative when speaking about cancer, and he admitted that calling things stable was conservative. Most likely the tumor area is slowly improving, which is what we were expecting.
After the last scan he reported that there were some areas in the lung that showed up in the PET, that were most likely caused by the bout of Pneumonia I had earlier in the year. On today's scan one of those spots had completely disappeared. Supposedly the radiologist who was viewing the PET with him asked if I had a recent infection without knowing my history. The other spots in the lung were again...stable to slightly improved. He felt very confident that those spots in the lungs were just showing inflammation and that the infection was lingering.
So the bottom line is that I am not cancer free, but that what is there is only minimal. Every scan without an increase in cancer activity marks progress. Without today's news the doctor wants me to consider to stay on my current regimen of immune suppressants. If I had no signs of cancer, the plan would be to put me on more immune suppressants to treat my GVHD. However, with the way things are now, I just have to deal with the GVHD and hope that there is also a Graft Versus Tumor effect occurring.
I'd be happy to not deal with the GVHD symptoms, but its better to live with them and without cancer. Thanks for all of the support, and I hope everybody enjoys their Memorial Day weekend.
Thursday, May 21, 2009
Day +154
Been a while since I updated the blog, so I'll try to remember as much as I can in this post. Mother's Day was almost two weeks ago, and I had a great time with both Kate and my mother. Unfortunately that night my left eye started watering, and wouldn't stop until I fell asleep that night. When I woke up in the morning my eyelids were hard to open because I had dried tears caked in my eyelashes. I had been having a bit more crustiness when I woke in the morning, but the excessive watering and crustiness were both new. I went ahead and called NIH and got a quick appoointment the next day with the opthamologist. I was pretty down at this point, because I was worried about having the GVHD affecting my eyes as well.
I consider myself a pretty good patient, but I absolutely hate visiting eye doctors. I can't stand anything going near my eyes, and I wasn't looking forward to this visit. The first test the nurse had me do involved putting a tab in between my lower eyelids and my eyeball. That was uncomfortable, but I did relatively well by my standards. I had to do that twice, once with eye drops and once without.
Later I saw the opthamologist and she did an exam that was uncomfortable at times, however she had some decent news for me. The main concern with occular GVHD is dry eyes. Having dry eyes can lead to a lot of serious complications with eye sight, but apparently my eyes tear really well. From the examination the doctor didn't see any signs of infection, but she couldn't rule it out either. She explained that while the new immune system didn't appear to hurt the gland that produces water in the tears, it might be hurting the glands that produce oil. Without enough oil in the tears, they would evaporate quickly, and that was what was causing the crustiness around the eyes. She gave me an antibiotic for my eyes, and explained a few things to help keep the glands located near the eye lashes clean and effective. She told me that I would probably deal with this problem for about a week, but that she wasn't concerned about GVHD or an infection.
So I left that appointment in a much more positive mood, and the only thing left to do before heading out to Wisconsin was my Hickman removal. On Wednesday I went in to get the Hickman taken out, and I did that with a process that took about 20 minutes. I was numbed up pretty good, and there was some yanking and pulling by the doctor before it was all done. Its definitely been a great feeling to have the Hickman out. I don't have to worry about my movement at all, and I can jump into the shower again.
With the Hickman out, it was off to Wisconsin with Kate, Isaiah, and Matt. I drove the first 350 miles and felt pretty good doing that. My eyes started to water a bit, and that bothered me enough that I didn't want to drive any longer. That was really the last night that my eyes bothered me significantly, and they have been getting better since then.
The trip to Wisconsin was a lot of fun. Milwaukee was a fun city to hang out in, although we saw its good side without the sub-zero temperatures and several feet of snow.
I had an appointment with the dermatologist at NIH after driving back to Maryland. She felt my skin was more irritated compared to two weeks ago when she had seen me. She took a look at my mouth as well, and showed some concern about the GVHD. She called one of the doctors with the transplant team who explained to her that the team wanted to taper me further off of the immune suppressants because I still have evidence of disease. The dermatologist seems to think more immune suppressants are needed because of the progression of the GVHD, but that isn't an option until the cancer is gone. So until the PET scans show I am cancer free, it seems like I'll have to deal with the GVHD and the doctors will try to treat it topically. The dermatologist bumped me up from a moderate steroid to a strong steroid for the rash on my neck and chest. Since doing that just two days ago, I think I've noticed a difference already.
The next thing up was heading back to work. Yesterday was my first day returning to work, and I made it back again today. Things went well, and I was able to control my environment without letting anybody put their hands all over me or get stuck in any groups. I did meet with one student one on one, which felt good to do again, and also did some more administrative work to help out one of my superiors. I was pretty tired yesterday and ended up falling asleep when Isaiah did. I wasn't as tired as when I worked while going through chemo. However, I definitely realized that I'm not back to the energy level that I should have. It was good to be back though, and the kids and the staff made me feel good to be back.
So after a brutal two day work week I will take a day off from school tommorow to have a PET scan before the three day weekend. Its only been a month since my last scan, but I had my immune suppressants tapered afterwards. With the lower level of immune suppressants there will hopefully be some good results on this scan. As always...prayers and good thoughts are appreciated, and hopefully I'll have some good news to report tommorow evening.
I consider myself a pretty good patient, but I absolutely hate visiting eye doctors. I can't stand anything going near my eyes, and I wasn't looking forward to this visit. The first test the nurse had me do involved putting a tab in between my lower eyelids and my eyeball. That was uncomfortable, but I did relatively well by my standards. I had to do that twice, once with eye drops and once without.
Later I saw the opthamologist and she did an exam that was uncomfortable at times, however she had some decent news for me. The main concern with occular GVHD is dry eyes. Having dry eyes can lead to a lot of serious complications with eye sight, but apparently my eyes tear really well. From the examination the doctor didn't see any signs of infection, but she couldn't rule it out either. She explained that while the new immune system didn't appear to hurt the gland that produces water in the tears, it might be hurting the glands that produce oil. Without enough oil in the tears, they would evaporate quickly, and that was what was causing the crustiness around the eyes. She gave me an antibiotic for my eyes, and explained a few things to help keep the glands located near the eye lashes clean and effective. She told me that I would probably deal with this problem for about a week, but that she wasn't concerned about GVHD or an infection.
So I left that appointment in a much more positive mood, and the only thing left to do before heading out to Wisconsin was my Hickman removal. On Wednesday I went in to get the Hickman taken out, and I did that with a process that took about 20 minutes. I was numbed up pretty good, and there was some yanking and pulling by the doctor before it was all done. Its definitely been a great feeling to have the Hickman out. I don't have to worry about my movement at all, and I can jump into the shower again.
With the Hickman out, it was off to Wisconsin with Kate, Isaiah, and Matt. I drove the first 350 miles and felt pretty good doing that. My eyes started to water a bit, and that bothered me enough that I didn't want to drive any longer. That was really the last night that my eyes bothered me significantly, and they have been getting better since then.
The trip to Wisconsin was a lot of fun. Milwaukee was a fun city to hang out in, although we saw its good side without the sub-zero temperatures and several feet of snow.
I had an appointment with the dermatologist at NIH after driving back to Maryland. She felt my skin was more irritated compared to two weeks ago when she had seen me. She took a look at my mouth as well, and showed some concern about the GVHD. She called one of the doctors with the transplant team who explained to her that the team wanted to taper me further off of the immune suppressants because I still have evidence of disease. The dermatologist seems to think more immune suppressants are needed because of the progression of the GVHD, but that isn't an option until the cancer is gone. So until the PET scans show I am cancer free, it seems like I'll have to deal with the GVHD and the doctors will try to treat it topically. The dermatologist bumped me up from a moderate steroid to a strong steroid for the rash on my neck and chest. Since doing that just two days ago, I think I've noticed a difference already.
The next thing up was heading back to work. Yesterday was my first day returning to work, and I made it back again today. Things went well, and I was able to control my environment without letting anybody put their hands all over me or get stuck in any groups. I did meet with one student one on one, which felt good to do again, and also did some more administrative work to help out one of my superiors. I was pretty tired yesterday and ended up falling asleep when Isaiah did. I wasn't as tired as when I worked while going through chemo. However, I definitely realized that I'm not back to the energy level that I should have. It was good to be back though, and the kids and the staff made me feel good to be back.
So after a brutal two day work week I will take a day off from school tommorow to have a PET scan before the three day weekend. Its only been a month since my last scan, but I had my immune suppressants tapered afterwards. With the lower level of immune suppressants there will hopefully be some good results on this scan. As always...prayers and good thoughts are appreciated, and hopefully I'll have some good news to report tommorow evening.
Thursday, May 7, 2009
Day +140
Today was a clinic day, and things went pretty well. The doctor I saw today let me know that she caught the virus I had a few weeks ago. She felt pretty certain I just had allergies, and then BOOM...she got what I had. She was feeling better though, and so am I.
There is one thing bothering me, and that is my mouth. I've had the chronic GVHD of the mouth and skin for a while now. The skin doesn't bother me as much, but the oral GVHD can be a pain in the butt when it flairs up. I saw the dentist last week and her exam showed that my mouth cleared up a lot since starting a steroid ointment. She reccomended that I start using the ointment every other day rather than twice a day since my mouth was looking so good. A week later I am having a bit of trouble pronouncing my words because the ulcers under my tongue have flared back up. So I am resuming the twice a day use of the ointment for now, and hopefully it will clear up quickly again.
My skin is still discolored, mostly in areas that I've severely burned in the past...face, neck, shoulders, and chest. Last week it itched a lot more and looked a deep shade of red. The dermatologist at NIH started me on a steroid cream for my skin, and the itching has subsided while the discoloration is now a healthier looking pink. At this point my skin doesn't bother me. The biggest nuisance is having to avoid a lot of sun exposure. Thats probably something I'll have to do for a while, so long sleeve shirts, SPF 60, and staying in during the middle of the day will stick around for a bit.
The next couple of weeks should be pretty exciting for me. Next week Kate, my brother Matt, Isaiah, and I will drive from DC out to Milwaukee for other brother Tim's graduation from Marquette. The Docs are on board with that, and I've been told it will be fine to skip my appointment next week for us to get an earlier start. Before we head out, I might also get my Hickman line removed. So a week from now I will likely be on my first trip greater than 50 miles from home since pre-relapse last July. Having the Hickman line out will be a big comfort, and I'll look forward to jumping into the shower again, rather than having to look in the mirror and fuss with the lines and an aquaguard.
Our plan is to arrive back from Wisconsin on Tuesday the 19th, and Wednesday the 20th will be my first day back at work! It will be fun to get back to a normal routine for both Kate and I, even if it will only last until the end of school in DC in mid-June. If all that isn't enough excitement, I have a PET scan that Friday. I guess I look forward to PET scans, although anxious might be a better way to describe how Kate and my mom feel leading up to those scans. Although the news wasn't bad last time around, the PET scan results were somewhat disappointing. Hopefully, we are heading to some more positive news with that scan in a few weeks.
There is one thing bothering me, and that is my mouth. I've had the chronic GVHD of the mouth and skin for a while now. The skin doesn't bother me as much, but the oral GVHD can be a pain in the butt when it flairs up. I saw the dentist last week and her exam showed that my mouth cleared up a lot since starting a steroid ointment. She reccomended that I start using the ointment every other day rather than twice a day since my mouth was looking so good. A week later I am having a bit of trouble pronouncing my words because the ulcers under my tongue have flared back up. So I am resuming the twice a day use of the ointment for now, and hopefully it will clear up quickly again.
My skin is still discolored, mostly in areas that I've severely burned in the past...face, neck, shoulders, and chest. Last week it itched a lot more and looked a deep shade of red. The dermatologist at NIH started me on a steroid cream for my skin, and the itching has subsided while the discoloration is now a healthier looking pink. At this point my skin doesn't bother me. The biggest nuisance is having to avoid a lot of sun exposure. Thats probably something I'll have to do for a while, so long sleeve shirts, SPF 60, and staying in during the middle of the day will stick around for a bit.
The next couple of weeks should be pretty exciting for me. Next week Kate, my brother Matt, Isaiah, and I will drive from DC out to Milwaukee for other brother Tim's graduation from Marquette. The Docs are on board with that, and I've been told it will be fine to skip my appointment next week for us to get an earlier start. Before we head out, I might also get my Hickman line removed. So a week from now I will likely be on my first trip greater than 50 miles from home since pre-relapse last July. Having the Hickman line out will be a big comfort, and I'll look forward to jumping into the shower again, rather than having to look in the mirror and fuss with the lines and an aquaguard.
Our plan is to arrive back from Wisconsin on Tuesday the 19th, and Wednesday the 20th will be my first day back at work! It will be fun to get back to a normal routine for both Kate and I, even if it will only last until the end of school in DC in mid-June. If all that isn't enough excitement, I have a PET scan that Friday. I guess I look forward to PET scans, although anxious might be a better way to describe how Kate and my mom feel leading up to those scans. Although the news wasn't bad last time around, the PET scan results were somewhat disappointing. Hopefully, we are heading to some more positive news with that scan in a few weeks.
Saturday, April 25, 2009
Day +127
Yesterday was one of those important days when I have to get a PET scan to check on the progress of my treatment. The day started out pretty normal with my usual clinic appointment. I felt the GVHD I've been experiencing hadn't really changed much, and I was feeling pretty good after the coughing and runny nose from the previous week. The doctor who saw me shared that the virus I had last week was adeno virus. She was surprised that I was feeling so well, because she said it knocks most people off of their feet. While I did feel less energy than normal, I was still pretty active over the last week. Must be good news that I felt reasonably well despite that virus.
The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.
After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.
Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.
Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.
So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.
So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.
If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.
All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.
Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.
The doctor also examined my mouth and skin for GVHD, and felt my mouth had improved over the last week. My mouth is feeling better, and its nice to have her opinion that it is visually improved as well. My skin is pretty splotchy on my upper body, especially on my neck. I don't feel the desire to itch that much, but its definitely noticeable. I'll have a biopsy on Monday with the dermatologist.
After my clinic appointment I went to the dentist to have an oral biopsy. I filled out a few quick surveys about my mouth, the dentist examined the GVHD in my mouth, and then took a snip from inside my cheek. The site of the biopsy bled for a bit while I bit down on some gauze. However, a day later I haven't even noticed where it was taken from. The dentist wanted me to pay particular attention to under my tongue while applying the ointment to treat the GVHD. Apparently the rest of my mouth doesn't look so bad.
Then came the PET scan which has become very commonplace. I was sitting with my mother before the scan, and counted 11 PETs that I've had since this whole process began almost two years ago. It was uneventful, and I went to the day hospital to wait for my doctors to report back on the results. My parents and I waited a while, and two of my doctors eventually came with a not so pleasant look on the lead doctor's face.
Don't get too worried. He didn't really have bad news, but was kind of upset that he hadn't been able to view the results of the scan before meeting with us. He had a hectic day with the usual outpatient clinic in the morning, as well as duties with his in-patient rotation as well. When he went to view the scan, the radiologist had already left for the day. He was able to tell us what the preliminary report had stated, but not what his own opinion was from the scan. The radiologist's report showed a small uptake in the chest. Its always disheartening to hear about any uptake on a PET scan, but the doctor was not too worried because my recent respiratory virus could have lead to an increase in activity in the lung. He also shared that the CT scan I had last week when I came in with the symptoms of the virus had not shown any growth in the tumor mass. He was pretty confident that this wasn't any cancerous growth, but he could not say that with certainty because of the uptake on the PET.
So the doctor called back today after viewing the PET scan himself. His opinion was that at worst...the tumor mass had stayed the same. Yesterday's scans showed three other spots that had increased activity, although their SUVs were very low. He didn't think these areas were cancerous, but he wanted to compare these spots to PET scans from back in 2008. He was unable to do that today because the files are too large to be kept readily available on computers.
So what does all of this mean?The plan for now is to continue to taper the immune suppressant drugs I am on. This decision is standard for the protocol. What the taper will do will allow my immune system to fight the remaining tumor cells a bit more effectively. The drawback to this is the potential for more Graft Versus Host Disease. If there was a clear decrease in cancer cells on the PET then the transplant team might have decided to keep my current levels of immune suppressant drugs the same. However, the doctors feel the increased graft versus tumor effect is worth risking a greater chance of GVHD.
If there had been clear growth of the cancerous cells, the doctors would have quickened the tapering process, exposing me to greater risk of GVHD complications while also giving my immune system the maximum ability to fight the cancer cells. So for now I am taking a lower dose of the immune suppressant drugs, and I'll have to be even more careful to monitor my GVHD. I'll have another PET scan in a month to see how things have progressed on this lower level of immune suppression.
All of this information can seem intense, but the bottom line is that I am still doing well. There is no regrowth, and while the progress isn't as quick as I would like, it is still being made. There is a constant need to remind myself that this is a long process and that the result we want will eventually come.
Some good news is that my doctor had no problems with my plans to visit Milwaukee for my brother Tim's graduation next month! That is very important to me, so I am happy for that. He is also supportive of me returning to work, and I anticipate that I'll be getting back to work at some point in May. Those are two very tangible events that I have to look forward to, which is a huge blessing. Today is Kate's birthday, so that is another reason to celebrate. She and I continue to get old, and we are both happy that I'll be healthy enough to celebrate tommorow.
Friday, April 17, 2009
Day +119
Spent a little more time at NIH this week than I was planning on. I developed a cough and runny nose earlier in the week, and it wasn't really getting better after a day or so. On Tuesday I went in to NIH and was seen by the PA. I chekced out alright, but she had blood drawn and some other quick tests run. She sent me home with some cough medicine and Zyrtec, and wanted me to come back the next day for a CT scan.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Wednesday's CT scan showed that my lungs were pretty clear and that there was some irritation in my sinuses. However, the PA and one of my doctors noted that there wasn't any pus, which means it likely was not sinusitis. Their opinion was that I was dealing with allergies.
After those two visits this week I went to my scheduled appointment yesterday. While I was there, the results from one of Tuesday's tests came back that showed I had a respiratory virus. So I guess it was something else besides simple allergies. They don't know what type of virus it is yet, and they haven't changed my treatment at all. For now they just want me to wear masks if I am out in public, and to monitor my temperature for fevers a bit more carefully than usual.
The other issues I've been dealing with are the minor GVHD symptoms in my mouth and skin. I've noticed my skin clearing up and I'm not itching that much compared to last week. So I reported that I thought things were clearing up, only to have the doctors say they thought it looked worse. Hmm...this might be one of the instances when I trust my memory more than thiers. The acne-like rash is gone, but they were concerned about some discoloration of the skin. I guess I'll continue to use the creams the dermatologist prescribed, and I'll be cautious about my sun exposure. However, I'm feeling positive as long as I'm not itching that much.
The sores in my mouth the previous week stopped bothering me two days after taking the ointment prescribed by the dentist. My mouth feels a lot better, but again one of the doctors thought my mouth looked worse. What I feel is obviously most important to me, but I figure the doctors are more comfortable with what they can personally observe. A dental consult was set up yesterday morning so they could take a biopsy and verify the GVHD. The dentist examined my mouth and felt it looked better when comared to the photos that were taken of my mouth a week earlier by the other dentist. She opted not to take a biopsy, and left that up to the dentist who I will see for a follow up in two weeks. So not much was accomplished with the whole process.
The good news is that my blood counts are still coming back looking excellent. The minor GVHD isn't bothering me right now, and thats fine by me. Next week I'll have another PET scan to see how the cancer in my body is acting. Those results are always big news, but until then I guess things will just go on as usual.
Thursday, April 9, 2009
Day +112
Its been a good week and I'm continuing to do well. I'm home alone right now, and I think thats a sign of my progress. Kate and Isaiah took a trip up to her home in New York this week, which is great since she hasn't been able to get back there in a long time because of this situation. Having my health in a place where it doesn't feel uncomfortable for me to be on my own is a great thing.
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
So I had a dental appointment at NIH this morning at 9:00. That was a good thing, because the regular clinic visit was sped up to fit me in, and there wasn't a lot of waiting around. The rash on my face, chest, and back continued to clear up and its hard to really see it now. I explained that I do continue to itch at times, and occasionally have a sensation on my skin that feels like pin pricks. Both of these issues are around my chest and upper back, so they are in the same spots I had some of the rash earlier. The doctor gave my skin a good look, but really couldn't see much.
The other sign of GVHD that the transplant team had noticed was in my mouth. My mouth has felt dry at times over the past week, but I probably wouldn't have even noticed it if I hadn't been aware to notice it. I am definitely aware of a couple of sores that have developed under my tongue. One doctor felt the inside of my cheek was improved, so she thought it was somewhat good that my dental consult was today. Having the sores gives the dentist something a little better to look at.
So the dentist played around inside my mouth and took a bunch of pictures to document what it looks like. She explained that both the inside of the cheek and the sores under the tongue look like minor GVHD. She noted that I had a lot of saliva and that my gums appeared in good shape. Those were two positives in terms of the GVHD. I was prescribed a steroid cream to apply to the affected areas. She felt that should do a good job of clearing things up, and I'll follow up with her in three weeks.
Other than the issues that point to some GVHD, I seem to be doing great. My neutrophils and the rest of my blood work came back normal. My energy is up and I've got no complaints at all right now. Thanks to everybody for their recent support, and I hope everybody enjoys their Easter weekend coming up!
Friday, April 3, 2009
Day +105
The past week has been another good one. On Monday I had a dermatology appointment, and by that point my rash had subsided considerably. It still itches occassionally, but the dermatologist thought it had improved. He did prescribe an antibacterial cream to go with the steroid cream already prescribed. However, he wasn't overly concerned, and I'll continue with treatment as usual.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
Today my doctor remarked about how the rash had cleared up. Thats a good sign, but he also noted the inside of my mouth looked like minor GVHD. They had wanted a dental consult this past week, but the appointment wasn't made. It'll be scheduled for next week, when they will probably take a biopsy from inside my mouth to check the tissue. I haven't felt any discomfort in my mouth, but its apparently obvious to the doctors. They also took a few swabs of my inner cheek in order to check for any fungal or viral infections.
Other than that issue things appeared fine from the doctor's perspective. My blood results look good, and I've had nothing negative to report. My doctor wants to wait until my immune-suppressant drugs are tapered again before removing my hickman line. That decision will come in two weeks, so that will be another little thing to look forward to.
Some good news is that I spoke with the principal at my job, and he is willing to try and help me return to work with a shift in my responsibilities. He is willing to help me find tasks that involve support of the program without direct student involvement, and limiting my interactions with students to controlled, one on one situations. I shared this with my doctor today and he was happy to hear this news. When I initially brought up my desire to return to work last week with my doctor, he seemed pretty hesitant about it. Today I got the feeling that he was sympathetic to my need to return to work, and was happy that my supervisor and I were creating a plan that would allow me to better control my work environment.
The principal is trying to find out details from human resources about what I need to do to reenter the system. I'm not sure of a time frame for when things will work out, but I feel that the process is moving forward.
In addition to all of the good news with my health, I turned 27 this week. Twenty six was a pretty intense year, but its a blessing to be here for my 27th. It was also great to be able to celebrate my birthday without feeling ill or exhausted.
Thursday, March 26, 2009
Day +98
Today was my last appointment at NIH before day +100, but as one of my doctors pointed out, it was somewhat anti-climactic. For people who live out of town, of whom there are many at NIH, reaching day +100 in good health means they get to return home. I've been lucky enough to be at home since January, so its not as big a milestone for me.
I could be celebrating the last of my twice weekly NIH visits, but since I have a follow up appointment with the dermatologist on Monday, I'll be heading back two times next week as well. The rash I had on my face has cleared up somewhat. My face doesn't itch as much, and it looks to have cleared up around my jaw line. There is still a decent amount of the rash on my forehead and around my eyes. I have been itching more on my upper back, and have noticed some spots on my upper chest. The doctors haven't said definitively that it is Graft Versus Host Disease (GVHD), but the lead doctor has hinted that it might be.
In addition to the rash, the two doctors I saw today noticed some spots inside my cheeks that they think might be minor GVHD symptoms as well. So the plan is to add a dental visit as well to next week's schedule to get that looked at. If they suspect that either area is indeed a sign of GVHD, I'll probably have a skin biopsy in both areas so the sample can be tested.
Although the idea of GVHD scared me before the transplant, the doctors don't seem worried by what they see, and I'm not so worried either. The itching is only a minor irritant, and whatever they saw in my mouth hasn't bothered me at all.
One doctor also shared with me that my bone marrow biopsy from Monday showed I had about 50 to 60% bone marrow activity. She explained that bone marrow activity is usually 100 minus your age, so if I were completely healthy mine would be about 70 or a slight bit higher. She thought where I am now was good though.
As part of my day +100 testing I had an echocardiogram and a pulmonary functioning test. Both of the technicians who ran those tests said my heart and lungs look great. So nothing to worry about there. I also went to the eye doctor yesterday, and my prescription hasn't changed in the last year. So in terms of those three organs it doesn't look like there has been any negative effects of the chemotherapy and other drugs.
So the process goes on. My positive thinking is that if the rash and whatever mouth issue is going on are GVHD, then there is probably some more Graft Versus Tumor effect going on. At this point in the transplant protocol, the next scan would take place in three months. However, since I still have some disease in my body the transplant team wants me to have my next PET Scan in four weeks. So towards the end of April we will have another idea of how successfully the treatment is going.
I could be celebrating the last of my twice weekly NIH visits, but since I have a follow up appointment with the dermatologist on Monday, I'll be heading back two times next week as well. The rash I had on my face has cleared up somewhat. My face doesn't itch as much, and it looks to have cleared up around my jaw line. There is still a decent amount of the rash on my forehead and around my eyes. I have been itching more on my upper back, and have noticed some spots on my upper chest. The doctors haven't said definitively that it is Graft Versus Host Disease (GVHD), but the lead doctor has hinted that it might be.
In addition to the rash, the two doctors I saw today noticed some spots inside my cheeks that they think might be minor GVHD symptoms as well. So the plan is to add a dental visit as well to next week's schedule to get that looked at. If they suspect that either area is indeed a sign of GVHD, I'll probably have a skin biopsy in both areas so the sample can be tested.
Although the idea of GVHD scared me before the transplant, the doctors don't seem worried by what they see, and I'm not so worried either. The itching is only a minor irritant, and whatever they saw in my mouth hasn't bothered me at all.
One doctor also shared with me that my bone marrow biopsy from Monday showed I had about 50 to 60% bone marrow activity. She explained that bone marrow activity is usually 100 minus your age, so if I were completely healthy mine would be about 70 or a slight bit higher. She thought where I am now was good though.
As part of my day +100 testing I had an echocardiogram and a pulmonary functioning test. Both of the technicians who ran those tests said my heart and lungs look great. So nothing to worry about there. I also went to the eye doctor yesterday, and my prescription hasn't changed in the last year. So in terms of those three organs it doesn't look like there has been any negative effects of the chemotherapy and other drugs.
So the process goes on. My positive thinking is that if the rash and whatever mouth issue is going on are GVHD, then there is probably some more Graft Versus Tumor effect going on. At this point in the transplant protocol, the next scan would take place in three months. However, since I still have some disease in my body the transplant team wants me to have my next PET Scan in four weeks. So towards the end of April we will have another idea of how successfully the treatment is going.
Monday, March 23, 2009
Day +95
Day +100 of the transplant process occurs later in the week, so I had a PET scan and bone marrow biopsy today. Both procedures went very well. It can be uncomfortable lieing motionless with your arms above your head for 45 minutes during the PET Scan. However, I was able to sleep well. I dreamt twice that the procedure was done and I was getting off of the machine, only to wake up and realized I was still strapped in. Kind of strange, but the dreaming made it feel like the procedure flew by.
The BMB was extremely easy. There is one doctor who is known by patients and staff at NIH for being great at performing these procedures. Last time around he oversaw a less experienced doctor perform mine. That hurt like hell and involved shooting pains running down both legs. Today he performed the procedure himself, and it was quick and almost painless. I was happy that both of these procedures were relatively easy today.
After the BMB Kate, my parents, and I waited for the lead doctor on the transplant team to speak with us. He shared the good news that there is only one lesion remaining on the PET Scan. This area of tumor activity has shrank in size and intensity since my last scan. The best news would obviously be no more cancer left in the body. However, hearing that the cancer is decreasing is still extremely satisfying news.
A regrowth of cancer cells likely would have led to more chemotherapy, radiation, or some other therapy. This decrease means I'll be able to continue with the transplant process as scheduled. This will be the last week of scheduled bi-weekly visits to NIH. That will be a welcome change to my schedule. It will also mean that the tapering of the immune suppressant drugs I'm on can continue. As those are tapered, the graft versus tumor effect on my remaining cancer cells should increase also.
With things going so well I asked the doctor what he thought about me returning to work. Unfortunately he wasn't as enthusiastic about that as he was about my progress. He would like me to remain out of work until I'm completely off of immune suppressants in about three months. Part of his concern is that my job entails I work with kids. With a new immune system, spending time around children isn't something the transplant team wants to see. This is extremely frustrating because I am feeling great on a daily basis. I know I have the energy to be back at work, and its boring to be around the house as much as I am.
Despite my disappointment about not getting the response I wanted about working, I still have to view things positively. Its not enjoyable, but I have to remind myself that ensuring my long term health is the most important thing going on right now.
Thank you to everybody who has been praying and wishing me well. The positive thoughts are working!
The BMB was extremely easy. There is one doctor who is known by patients and staff at NIH for being great at performing these procedures. Last time around he oversaw a less experienced doctor perform mine. That hurt like hell and involved shooting pains running down both legs. Today he performed the procedure himself, and it was quick and almost painless. I was happy that both of these procedures were relatively easy today.
After the BMB Kate, my parents, and I waited for the lead doctor on the transplant team to speak with us. He shared the good news that there is only one lesion remaining on the PET Scan. This area of tumor activity has shrank in size and intensity since my last scan. The best news would obviously be no more cancer left in the body. However, hearing that the cancer is decreasing is still extremely satisfying news.
A regrowth of cancer cells likely would have led to more chemotherapy, radiation, or some other therapy. This decrease means I'll be able to continue with the transplant process as scheduled. This will be the last week of scheduled bi-weekly visits to NIH. That will be a welcome change to my schedule. It will also mean that the tapering of the immune suppressant drugs I'm on can continue. As those are tapered, the graft versus tumor effect on my remaining cancer cells should increase also.
With things going so well I asked the doctor what he thought about me returning to work. Unfortunately he wasn't as enthusiastic about that as he was about my progress. He would like me to remain out of work until I'm completely off of immune suppressants in about three months. Part of his concern is that my job entails I work with kids. With a new immune system, spending time around children isn't something the transplant team wants to see. This is extremely frustrating because I am feeling great on a daily basis. I know I have the energy to be back at work, and its boring to be around the house as much as I am.
Despite my disappointment about not getting the response I wanted about working, I still have to view things positively. Its not enjoyable, but I have to remind myself that ensuring my long term health is the most important thing going on right now.
Thank you to everybody who has been praying and wishing me well. The positive thoughts are working!
Thursday, March 19, 2009
Day +91
Things just keep rolling along. Today is Day +91 of the transplant process, so I have just a little over one week left until I hit day +100. At that point the transplant team will hopefully start seeing me less frequently, and I can begin transitioning slowly back towards regular life.
The past week has been pretty good. My energy has stayed high, I've avoided feeling sick, and I'm feeling great. The only thing going on with my body is I broke out in what looks similar to acne. I've got little red spots from my shoulders up, and its a little annoying because it itches off and on. The doctors on Monday said it didn't appear to be a GVHD rash, but couldn't say exactly what it was. So I saw the dermatologist at NIH yesterday. He wasn't quite sure what it was either. He said that one of the drugs I'm on can cause acne, but that since I've been on the drug at higher levels for months now, It would be strange for it to appear now. So for right now the doctors aren't changing anything, and I'll just use some prescription cream to deal with it.
My appointment today was pretty easy. I had nothing but positives to report to the doctors, and they had nothing negative to report to me. I know my family likes to hear what my blood counts are, but sometimes I'm just fine knowing that things aren't a concern. So I didn't ask about my blood counts from Monday or today, but I assume everything is well. Whenever they are concerned they end up calling me.
On Monday I'll have my PET scan in the morning and a bone marrow biopsy in the early afternoon. So that will make for a long day at NIH. The lead doctor on the transplant team said he would meet with my family and I in the afternoon after he gets a chance to see the PET scan. So our prayers over the next few days will be for positive results from that scan. I'd love to hear that there are no signs of cancer remaining, but I am keeping in mind that this is a long process. As long as there are no signs of growth, I'll be happy with the results.
The past week has been pretty good. My energy has stayed high, I've avoided feeling sick, and I'm feeling great. The only thing going on with my body is I broke out in what looks similar to acne. I've got little red spots from my shoulders up, and its a little annoying because it itches off and on. The doctors on Monday said it didn't appear to be a GVHD rash, but couldn't say exactly what it was. So I saw the dermatologist at NIH yesterday. He wasn't quite sure what it was either. He said that one of the drugs I'm on can cause acne, but that since I've been on the drug at higher levels for months now, It would be strange for it to appear now. So for right now the doctors aren't changing anything, and I'll just use some prescription cream to deal with it.
My appointment today was pretty easy. I had nothing but positives to report to the doctors, and they had nothing negative to report to me. I know my family likes to hear what my blood counts are, but sometimes I'm just fine knowing that things aren't a concern. So I didn't ask about my blood counts from Monday or today, but I assume everything is well. Whenever they are concerned they end up calling me.
On Monday I'll have my PET scan in the morning and a bone marrow biopsy in the early afternoon. So that will make for a long day at NIH. The lead doctor on the transplant team said he would meet with my family and I in the afternoon after he gets a chance to see the PET scan. So our prayers over the next few days will be for positive results from that scan. I'd love to hear that there are no signs of cancer remaining, but I am keeping in mind that this is a long process. As long as there are no signs of growth, I'll be happy with the results.
Thursday, March 12, 2009
Day +84
I've got a good day going on after a really nice time yesterday. The weather was great yesterday, and I took advantage by running a bit with Kate. I definitely worked my muscles in a way that I haven't been used to in a while. So I'm fairly sore today, but its definitely a good sore. In addition to exercising for a couple of hours, I was active the rest of the day also. I had enough energy to do a good amount of work around the house, and I know Kate was appreciative.
Today I went in for my clinic appointment, and I was in and out in less than an hour. It feels good to be done with those type of appointments so quickly, but theres usually a suspicion that they'll find something to call me back to NIH with later. Well, I got a call from the transplant team and was told my neutrophils were at 18. When I told Kate 18, she had a shocked look on her face because she was thinking about .18. Nope...no need to worry. Thats an absolute neutrophil count of 18.0. The range for healthy neutrophils is somewhere between 3 and 8 I think. So 18 is plenty enough neutrophils for my immune system right now. So for now I don't have to give myself any more neupogen injections at home. I was scheduled to give them to myself every other day, but with my high neupogen count, that will be put off.
The high level of neutrophils is primarily caused by the neupogen injections, but my counts have never been that high before. Hopefully this means that my body's natural production is increasing as well. Kate noticed that I've been feeling a lot better since the IVIG infusion last week. Hopefully that has had a positive impact on my immune system, and my blood counts won't drop to the point of neutropenia again.
Today I went in for my clinic appointment, and I was in and out in less than an hour. It feels good to be done with those type of appointments so quickly, but theres usually a suspicion that they'll find something to call me back to NIH with later. Well, I got a call from the transplant team and was told my neutrophils were at 18. When I told Kate 18, she had a shocked look on her face because she was thinking about .18. Nope...no need to worry. Thats an absolute neutrophil count of 18.0. The range for healthy neutrophils is somewhere between 3 and 8 I think. So 18 is plenty enough neutrophils for my immune system right now. So for now I don't have to give myself any more neupogen injections at home. I was scheduled to give them to myself every other day, but with my high neupogen count, that will be put off.
The high level of neutrophils is primarily caused by the neupogen injections, but my counts have never been that high before. Hopefully this means that my body's natural production is increasing as well. Kate noticed that I've been feeling a lot better since the IVIG infusion last week. Hopefully that has had a positive impact on my immune system, and my blood counts won't drop to the point of neutropenia again.
Monday, March 9, 2009
Day +81
Things have been good over the weekend. I didn't have any fevers and felt great. Having nice weather for the first time in a few weeks was definitely a plus, and the family got to spend a lot of time outdoors. I did have to take some pain meds because of the back pain that comes with my neupogen shots, but thats not too big a deal.
At NIH today I didn't get the biopsy that the doctors told me they wanted. My lab results showed that my neutrophil count had risen significantly to 5.3, from .06 on Thursday. That makes the risk of infection a lot less likely, so its good to be out of the woods there.
The reason the doctors were thinking about pushing the bone marrow biopsy up to today was because I hadn't reacted to the neupogen shots last week. Since the shots apparently worked over the weekend, they decided to wait until the biopsy would be normally scheduled, which will be in two weeks. So I didn't have to deal with the pain today, but its still in the plans. Since I was taking the neupogen to create new neutrophil cells, the biopsy would likely show mostly new cells. The doctors hope by waiting a few weeks they will be able to get a more natural look at my bone marrow production, and hopefully see more mature blood cells.
Everything else seems to be good for now. My platelets bumped back up over 100, and my hemoglobin is over 10 for the first time in a while. The hemoglobin is especially good news in my mind, because the closer that gets to normal, the more energy I should have. With Isaiah at school today, Kate and I were able to take a quick bike ride this afternoon. I definitely had the energy and the lungs for it, but my leg muscles aren't in shape. Hopefully with better weather on the way, more outdoor activities will speed up my return to normal health.
At NIH today I didn't get the biopsy that the doctors told me they wanted. My lab results showed that my neutrophil count had risen significantly to 5.3, from .06 on Thursday. That makes the risk of infection a lot less likely, so its good to be out of the woods there.
The reason the doctors were thinking about pushing the bone marrow biopsy up to today was because I hadn't reacted to the neupogen shots last week. Since the shots apparently worked over the weekend, they decided to wait until the biopsy would be normally scheduled, which will be in two weeks. So I didn't have to deal with the pain today, but its still in the plans. Since I was taking the neupogen to create new neutrophil cells, the biopsy would likely show mostly new cells. The doctors hope by waiting a few weeks they will be able to get a more natural look at my bone marrow production, and hopefully see more mature blood cells.
Everything else seems to be good for now. My platelets bumped back up over 100, and my hemoglobin is over 10 for the first time in a while. The hemoglobin is especially good news in my mind, because the closer that gets to normal, the more energy I should have. With Isaiah at school today, Kate and I were able to take a quick bike ride this afternoon. I definitely had the energy and the lungs for it, but my leg muscles aren't in shape. Hopefully with better weather on the way, more outdoor activities will speed up my return to normal health.
Friday, March 6, 2009
Day +78
I had my usual appointment yesterday and like always I had nothing new to report and the doctors didn't have much to talk with me about. My white blood cells increased, but my neutrophils remained pretty low. Everything else looked good, and its pretty much more waiting to see whats going on with my body.
After the appointment I went ahead and got the IVIG that had been discussed on Monday. It was a baisc IV infusion pretty much like most I've had over the course of my treatment. I didn't have any issues with that, and it basically made for a long day. Hopefully that will help me combat any viruses that I come in contact with, and my neutrophil counts will stop dropping so dramatically.
Today I got a call from one of my nurses that the transplant team decided to move up by bone marrow biopsy from the end of the month to next Monday. My doctor wants to see the results of the biopsy sooner, in case there is any information to be gained from that which might explain my low neutrophil counts. So that gives me something painful to look forward to on Monday!
Everything else is going pretty well. Isaiah and Kate are doing great, and we are looking forward to some improved weather this weekend. I'm feeling good, but just need to keep on reminding myself to be patient with this process.
After the appointment I went ahead and got the IVIG that had been discussed on Monday. It was a baisc IV infusion pretty much like most I've had over the course of my treatment. I didn't have any issues with that, and it basically made for a long day. Hopefully that will help me combat any viruses that I come in contact with, and my neutrophil counts will stop dropping so dramatically.
Today I got a call from one of my nurses that the transplant team decided to move up by bone marrow biopsy from the end of the month to next Monday. My doctor wants to see the results of the biopsy sooner, in case there is any information to be gained from that which might explain my low neutrophil counts. So that gives me something painful to look forward to on Monday!
Everything else is going pretty well. Isaiah and Kate are doing great, and we are looking forward to some improved weather this weekend. I'm feeling good, but just need to keep on reminding myself to be patient with this process.
Tuesday, March 3, 2009
Day +74
I had an appointment this morning at NIH, and it was quicker to get over to Bethesda with a half foot of snow than it is on a morning with perfect weather. That was a nice surprise.
The only issue I had to report to the transplant team was that my cough hasn't gone away completely. Its better but I still cough a lot to get rid of congestion in the morning. The doctors listened to my lungs, and they sound completely clear, so thats good news. Everything else with my physical check up went well.
However, the results of my blood tests showed that my neutrophils had dropped once again. My absolute neutrophil count was a healthy 4.04 last Thursday, but had dropped to a meager .04 this morning. This occurred despite giving myself a neupogen shot on Friday in order to help keep my counts up.
So the doctors once again don't know what keeps causing my neutrophils to drop. I'll be taking the neupogen shots every day for now in order to raise my counts. The last two times this has happened I've ended up inpatient in the hospital with fevers. So far I am feeling great and haven't had an elevated temperature at all.
One theory that some of the doctors have shared is that I have been getting viruses that are subsequently slowing the production of neutrophils in my bone marrow. One doctor today brought up the idea of giving me Intravenous Immuoglobulin(IVIG). The IVIG is a type of blood product that contains antibodies from at least 1,000 different donors. What it would do is provide increased antibodies and allow my body to fight off these small viruses that they think are affecting me. The doctor who saw me today will consult with the rest of the transplant team, and I might receive the IVIG on Thursday.
So hopefully the neupogen shots increased my neutrophil count quickly and I don't get stuck with a fever which would require a stay at NIH. If my lousy neutrophil behavior is a result of these minor viruses, hopefully the IVIG will be a procedure that can get me over this hump in the process.
The only issue I had to report to the transplant team was that my cough hasn't gone away completely. Its better but I still cough a lot to get rid of congestion in the morning. The doctors listened to my lungs, and they sound completely clear, so thats good news. Everything else with my physical check up went well.
However, the results of my blood tests showed that my neutrophils had dropped once again. My absolute neutrophil count was a healthy 4.04 last Thursday, but had dropped to a meager .04 this morning. This occurred despite giving myself a neupogen shot on Friday in order to help keep my counts up.
So the doctors once again don't know what keeps causing my neutrophils to drop. I'll be taking the neupogen shots every day for now in order to raise my counts. The last two times this has happened I've ended up inpatient in the hospital with fevers. So far I am feeling great and haven't had an elevated temperature at all.
One theory that some of the doctors have shared is that I have been getting viruses that are subsequently slowing the production of neutrophils in my bone marrow. One doctor today brought up the idea of giving me Intravenous Immuoglobulin(IVIG). The IVIG is a type of blood product that contains antibodies from at least 1,000 different donors. What it would do is provide increased antibodies and allow my body to fight off these small viruses that they think are affecting me. The doctor who saw me today will consult with the rest of the transplant team, and I might receive the IVIG on Thursday.
So hopefully the neupogen shots increased my neutrophil count quickly and I don't get stuck with a fever which would require a stay at NIH. If my lousy neutrophil behavior is a result of these minor viruses, hopefully the IVIG will be a procedure that can get me over this hump in the process.
Thursday, February 26, 2009
Day +70
It was a quick trip to NIH today. The doctors felt I looked well, and I didn't have any negative news to report. My neutrophil count was at 4.7, so it is still nice and high. I'll continue to give myself neupogen shots twice a week to maintain it. There wasn't any other issues with my blood work today, so I was able to get out of their quickly.
My tacrolimus and sirolimus levels were a little high from Monday after they began tapering them off. Those results take all day to get, so I don't know what they were for today. Its possible the doctors might want to reduce the amount I'm giving myself even more, but I'll have to wait to hear about that.
My research nurse shared that towards the end of March I'll have another Pet Scan, bone marrow biopsy, and some heart and lung tests. That will be around day +100, and at that point I'll be able to decrease the frequency of my hospital visits if I continue to do well.
Day in and day out I am feeling pretty good. I still have a small cough in the morning, but do pretty well after I've cleared out the congestion. The cold weather irritates my lungs, so I haven't been outside much this week. Hopefully with March around the corner, the temperatures will begin to increase. Since my hospitilization I've noticed my energy hasn't been great, but I think that is to be expected. That hopefully shouldn't be an issue if I can stay healthy in the near future.
Some good news is that Isaiah got a good repot from his pediatrician yesterday. His lungs sounded clear to her, and she didn't see any issues of concern. So maybe last Sunday night was a quick virus that Isaiah is already over. It definitely feels good to be feeling well, and to see him feeling better also.
My tacrolimus and sirolimus levels were a little high from Monday after they began tapering them off. Those results take all day to get, so I don't know what they were for today. Its possible the doctors might want to reduce the amount I'm giving myself even more, but I'll have to wait to hear about that.
My research nurse shared that towards the end of March I'll have another Pet Scan, bone marrow biopsy, and some heart and lung tests. That will be around day +100, and at that point I'll be able to decrease the frequency of my hospital visits if I continue to do well.
Day in and day out I am feeling pretty good. I still have a small cough in the morning, but do pretty well after I've cleared out the congestion. The cold weather irritates my lungs, so I haven't been outside much this week. Hopefully with March around the corner, the temperatures will begin to increase. Since my hospitilization I've noticed my energy hasn't been great, but I think that is to be expected. That hopefully shouldn't be an issue if I can stay healthy in the near future.
Some good news is that Isaiah got a good repot from his pediatrician yesterday. His lungs sounded clear to her, and she didn't see any issues of concern. So maybe last Sunday night was a quick virus that Isaiah is already over. It definitely feels good to be feeling well, and to see him feeling better also.
Monday, February 23, 2009
Day +67
Today's appointment was pretty boring, but that doesn't mean we didn't have an exciting time at the hospital in the last 24 hours. Isaiah has had a cough the last few days, and yesterday he woke up from his sleep with a barking cough that made it difficult for him to breath. He was pretty upset, and didn't calm down when we steamed up the bathroom. So Kate and I took him over to the emergency room, and stayed 5 hours until the early morning. He was given some steroids to help open his airway, and he has felt fine all day today.
Its tough for Kate. If she isn't dealing with me and my sickness, she still has a 3 year old and all that comes with that. Luckily for us my parents were in town overnight, and my mom was able to drive me over to NIH today. My bloodwork came back looking good, and the doctors shared that the results from my last CT scan on Thursday showed my sinusitis and pneumonia had improved. I still find myself coughing now and then, but overall I'm feeling good.
Its tough for Kate. If she isn't dealing with me and my sickness, she still has a 3 year old and all that comes with that. Luckily for us my parents were in town overnight, and my mom was able to drive me over to NIH today. My bloodwork came back looking good, and the doctors shared that the results from my last CT scan on Thursday showed my sinusitis and pneumonia had improved. I still find myself coughing now and then, but overall I'm feeling good.
Thursday, February 19, 2009
Day +63
I left the hospital Wednesday as planned, and less than 24 hours later I was back at NIH for my regular Thursday appointment. The doctors had been tracking me daily while I was inpatient, so there wasn't much new information to be given or received. My blood counts are fine, and I'm feeling alright. I still find myself coughing here and there, but its not that bad. I had a CT scan while I was at NIH in order for the doctor's to track the progression of my sinus infection and pneumonia. I'm not sure what the scan told the doctors, but I feel pretty good. I've got a prescription to help me get through the night without coughing, which I'm sure is a blessing for Kate.
One change that was made in my treatment at today's visit was the level of tacrolimus and sirolimus that I'll be taking. Around day +60 the protocol I am on requires the doctors to begin tapering off those immune-suppressant drugs. So the level of those two drugs is reduced by a third. The significance of this is that the reduction of immune-suppressants should allow the new cells from my donor to fight my remaining cancer cells more efficiently. It also gives my body a greater capability to fight off infections, which after two hospital stays in the last month, I'm very happy to have. The other side of lowering the levels of tacrolimus and sirolimus is the increased potential of having Graft Versus Host Disease symptoms. The doctors haven't identified any GVHD with me yet, and hopefully I won't have to deal with any of that now. Who knows what will happen though.
The good news that I'm taking from the last week is that the transplant team appears really optimistic about how I am doing post-transplant. They don't know what caused my two recent infections, but they feel confident that by managing my neutrophil count through several neupogen shots a week, that I can better handle any infections in the future. Hopefully in the upcoming days and weeks I can continue to progress positively and get over this pneumonia that is currently still nagging at me.
One change that was made in my treatment at today's visit was the level of tacrolimus and sirolimus that I'll be taking. Around day +60 the protocol I am on requires the doctors to begin tapering off those immune-suppressant drugs. So the level of those two drugs is reduced by a third. The significance of this is that the reduction of immune-suppressants should allow the new cells from my donor to fight my remaining cancer cells more efficiently. It also gives my body a greater capability to fight off infections, which after two hospital stays in the last month, I'm very happy to have. The other side of lowering the levels of tacrolimus and sirolimus is the increased potential of having Graft Versus Host Disease symptoms. The doctors haven't identified any GVHD with me yet, and hopefully I won't have to deal with any of that now. Who knows what will happen though.
The good news that I'm taking from the last week is that the transplant team appears really optimistic about how I am doing post-transplant. They don't know what caused my two recent infections, but they feel confident that by managing my neutrophil count through several neupogen shots a week, that I can better handle any infections in the future. Hopefully in the upcoming days and weeks I can continue to progress positively and get over this pneumonia that is currently still nagging at me.
Tuesday, February 17, 2009
Day +61
Things are going well, although I'm still in the hospital with tomorrow as the planned discharge date. My neutrophil count finally bumped up yesterday, and they started me on oral antibiotics to continue fighting the pneumonia when I head home. I've been feeling really well the last few days, although I have a frequent cough. I know its good for me to be coughing right now to loosen things up in my chest, but its a pain to go through more than a box of tissues a day. Its bearable during the day, but only really gets annoying when its time to sleep. When I come back to the hospital for my outpatient visit on Thursday, I'll have another CT scan for them to check the progress of the pneumonia. Other than that the doctors have been very positive about how I am progressing.
Sunday, February 15, 2009
Days +56 to +59
Alright. Thursday was a big day because of the PET Scan, but theres been a lot of other stuff going on too. Time to get my thoughts together and put it out there.
Wednesday I started feeling a little scratch in my throat in the afternoon. It was really just a small irritation, but it caused me to wake up coughing once in the middle of the night.
So I reported that to the Dr I saw in clinic Thursday morning. She ordered blood cultures and a few other tests to see if they could identify what the cause was. Other than the scratchy throat though I was feeling pretty good. So I went in for my PET Scan and then went to the day hospital to get a magnesium infusion and a neupogen shot. My nueutrophil count dropped from 900 on Monday to 260 on Thursday. I wasn't surprised by that drop considering the sore throat.
The doctor came in to the day hospital in the afternoon to share the preliminary results of the PET Scan. Her first words about it were, "Its not bad news." Thats not exactly the words I was looking for, but I'll take it. The good news was that there wasn't any increase in intensity at the tumor sites. However, she and the radiologist who looked over the scan were baffled that one of the areas where tumor was present before seemd to have changed shape. There was also activity in the gut, where there hadn't been any before. Gut doesn't really sound like a medical term, but the doctors seem happy to use it. The spot of intensity in the gut was possibly symbolic of a graft versus host symptom.
So the disease hasn't progressed and thats great, but there were some issues that were unexplained. She wanted to schedule a CT scan in order to get a different look at the areas that showed intensity on the Pet Scan. The plan when I left the hospital on Thursday afternoon was to try and fit me in for a scan next Tuesday.
So here is when things got fun! I'm feeling kind of beat down at this point in the day, but I'm attributing it to waking up early, not being able to eat all day because of the PET Scan, and having a long day at the hospital. All I want to do is get home and sleep. So my parents who were at the hospital with me drive me home and I jump into bed and start to rest. My parents were planning on taking Isaiah for a couple of nights, while Kate and I got ready for Isaiah's birthday party on Saturday. Well...I was probably only home for about 45 minutes when my mom comes up to see me, and like a good mom with a sick child she feels my forehead. I feel like I'm burning up to her, so I take my temperature. 102.3 The threshold at which NIH wants to see you back in the hospital is 101.6, so I know I'll be heading back over to Bethesda. So I've been home for less than an hour and am already making plans to head back, knowing that I'll likely be staying inpatient for several days.
So my parents take Isaiah as planned, and Kate drives me over to NIH. This is exactly what Kate doesn't want. She has been such a great support through all of the cancer hassles over the last 18 months, but this was just not the weekend for me to get sick. Having me home and feeling good for Isaiah's birthday was something she was extremely excited for, and it was a big let down to know I would be in the hospital.
So Kate stayed with me for a few hours on Thursday evening. They got me started on IV antibiotics right away and ordered up some more blood tests. My fever stayed high until midnight, when I was given Tylenol and my fever finally subsided. My fever has yet to come back up since then, so thats a good deal.
So I find myself in the hospital Friday on Isaiah's actual birthday. Thats not a big deal since Isaiah was going to spend that day with my parents anyways. I'm sure Kate would have liked some of my help straightening up around the house, but then again she probably got a lot done without my lazy butt in the way. While everybody else was busy with life on the outside, I was able to have the CT scan that my doctor had wanted next week. That went quickly and easily, and then it was time for a consult with the Ear, Nose, and Throat team. They were looking at my sinuses, since I had woken up with some sinus issues that morning. So they did some procedure were a tube with a camera on the end is stuck up my nose so the doctor can see inside the sinus. It wasn't painful, but it certainly wasn't comfortable either. Thankfully my nose was clean, and the Doc didn't see any signs of fungal or bacterial infection in my sinuses. However, he did share that the results of the CT showed some inflamation.
So that was Friday. I was feeling better than before, but was still dealing with the sinus issue, the sore throat, and a cough when I tried to sleep. On Saturday morning my parents came over to see me and had a big smile on their faces. They got some good news from the Dr who was about to come in and see me. So the doctor explained that the CT scan showed no growth in size of the tumor cells. He explained that while chemotherapy will show immediate reduction in size of cancer cells, the immune response with a bone marrow transplant takes a lot longer for the positive results to be seen. However, he was extremely positive that there was no growth. He went on to explain that after the immune suppressant drugs I am on are tapered off, there would likely be a boost in the graft versus tumor effect. The change in shape in the chest from the PET scan was able to be explained as a small case of pneumonia by the CT scan. He also explained that there was no worry about the area of intensity in the gut that was seen on the PET scan.
So...my goal for the day was to surprise Katie by showing up at Isaiah's party. I asked the doctors if I could have a day pass for the afternoon, and they felt it would be fine. So after receiving my IV antibiotic at about 1:00, my parents and I headed over to our house. Isaiah was there at the door to greet me with a valentine he made with his mom that week. After stepping into the door, Kate came out of the dining room and was completely shocked that I had left the hospital and made it to Isaiah's party. Kate had convinced herself that I wouldn't be there to celebrate Isaiah's birthday party, so it was great to show up at home to surprise her. That was probably the best Valentines Day gift I've ever been able to give, and it didn't cost me a thing. Of course it would have been pretty impossible to try and plan that type of gift out.
So after a fun day watching Isaiah interact with his family, open presents, and chow down on his Thomas the Tank Engine cake, I headed back to NIH. I was feeling pretty good but was tired by that point. Unfortunately I found myself still coughing last night as I tried to sleep.
This morning the doctors came by and let me know that all of the tests they ran have come back, and none were positive. So I don't have the flu or any other viruses. It feels strange to hear the doctors excited that I only have pneumonia. My neutrophil counts are still low, .070, so I am still waiting for those to come up. The doctor yesterday said that they wanted me above .500 before they would let me go. The doctors today also expressed that they want to put me on an oral antibiotic when I leave the hospital, so that they can continue to fight what might be causing my infection. So things are looking pretty good overall. The long term prognosis is still good, and the short term problem seems to be under control. I was able to spend a great Valentines Day afternoon celebrating Isaiah's birthday, so being sick didn't hold me back from that. It looks like I'll still be in the hospital for a couple of days, but thats not too long in the big scheme of this process.
Wednesday I started feeling a little scratch in my throat in the afternoon. It was really just a small irritation, but it caused me to wake up coughing once in the middle of the night.
So I reported that to the Dr I saw in clinic Thursday morning. She ordered blood cultures and a few other tests to see if they could identify what the cause was. Other than the scratchy throat though I was feeling pretty good. So I went in for my PET Scan and then went to the day hospital to get a magnesium infusion and a neupogen shot. My nueutrophil count dropped from 900 on Monday to 260 on Thursday. I wasn't surprised by that drop considering the sore throat.
The doctor came in to the day hospital in the afternoon to share the preliminary results of the PET Scan. Her first words about it were, "Its not bad news." Thats not exactly the words I was looking for, but I'll take it. The good news was that there wasn't any increase in intensity at the tumor sites. However, she and the radiologist who looked over the scan were baffled that one of the areas where tumor was present before seemd to have changed shape. There was also activity in the gut, where there hadn't been any before. Gut doesn't really sound like a medical term, but the doctors seem happy to use it. The spot of intensity in the gut was possibly symbolic of a graft versus host symptom.
So the disease hasn't progressed and thats great, but there were some issues that were unexplained. She wanted to schedule a CT scan in order to get a different look at the areas that showed intensity on the Pet Scan. The plan when I left the hospital on Thursday afternoon was to try and fit me in for a scan next Tuesday.
So here is when things got fun! I'm feeling kind of beat down at this point in the day, but I'm attributing it to waking up early, not being able to eat all day because of the PET Scan, and having a long day at the hospital. All I want to do is get home and sleep. So my parents who were at the hospital with me drive me home and I jump into bed and start to rest. My parents were planning on taking Isaiah for a couple of nights, while Kate and I got ready for Isaiah's birthday party on Saturday. Well...I was probably only home for about 45 minutes when my mom comes up to see me, and like a good mom with a sick child she feels my forehead. I feel like I'm burning up to her, so I take my temperature. 102.3 The threshold at which NIH wants to see you back in the hospital is 101.6, so I know I'll be heading back over to Bethesda. So I've been home for less than an hour and am already making plans to head back, knowing that I'll likely be staying inpatient for several days.
So my parents take Isaiah as planned, and Kate drives me over to NIH. This is exactly what Kate doesn't want. She has been such a great support through all of the cancer hassles over the last 18 months, but this was just not the weekend for me to get sick. Having me home and feeling good for Isaiah's birthday was something she was extremely excited for, and it was a big let down to know I would be in the hospital.
So Kate stayed with me for a few hours on Thursday evening. They got me started on IV antibiotics right away and ordered up some more blood tests. My fever stayed high until midnight, when I was given Tylenol and my fever finally subsided. My fever has yet to come back up since then, so thats a good deal.
So I find myself in the hospital Friday on Isaiah's actual birthday. Thats not a big deal since Isaiah was going to spend that day with my parents anyways. I'm sure Kate would have liked some of my help straightening up around the house, but then again she probably got a lot done without my lazy butt in the way. While everybody else was busy with life on the outside, I was able to have the CT scan that my doctor had wanted next week. That went quickly and easily, and then it was time for a consult with the Ear, Nose, and Throat team. They were looking at my sinuses, since I had woken up with some sinus issues that morning. So they did some procedure were a tube with a camera on the end is stuck up my nose so the doctor can see inside the sinus. It wasn't painful, but it certainly wasn't comfortable either. Thankfully my nose was clean, and the Doc didn't see any signs of fungal or bacterial infection in my sinuses. However, he did share that the results of the CT showed some inflamation.
So that was Friday. I was feeling better than before, but was still dealing with the sinus issue, the sore throat, and a cough when I tried to sleep. On Saturday morning my parents came over to see me and had a big smile on their faces. They got some good news from the Dr who was about to come in and see me. So the doctor explained that the CT scan showed no growth in size of the tumor cells. He explained that while chemotherapy will show immediate reduction in size of cancer cells, the immune response with a bone marrow transplant takes a lot longer for the positive results to be seen. However, he was extremely positive that there was no growth. He went on to explain that after the immune suppressant drugs I am on are tapered off, there would likely be a boost in the graft versus tumor effect. The change in shape in the chest from the PET scan was able to be explained as a small case of pneumonia by the CT scan. He also explained that there was no worry about the area of intensity in the gut that was seen on the PET scan.
So...my goal for the day was to surprise Katie by showing up at Isaiah's party. I asked the doctors if I could have a day pass for the afternoon, and they felt it would be fine. So after receiving my IV antibiotic at about 1:00, my parents and I headed over to our house. Isaiah was there at the door to greet me with a valentine he made with his mom that week. After stepping into the door, Kate came out of the dining room and was completely shocked that I had left the hospital and made it to Isaiah's party. Kate had convinced herself that I wouldn't be there to celebrate Isaiah's birthday party, so it was great to show up at home to surprise her. That was probably the best Valentines Day gift I've ever been able to give, and it didn't cost me a thing. Of course it would have been pretty impossible to try and plan that type of gift out.
So after a fun day watching Isaiah interact with his family, open presents, and chow down on his Thomas the Tank Engine cake, I headed back to NIH. I was feeling pretty good but was tired by that point. Unfortunately I found myself still coughing last night as I tried to sleep.
This morning the doctors came by and let me know that all of the tests they ran have come back, and none were positive. So I don't have the flu or any other viruses. It feels strange to hear the doctors excited that I only have pneumonia. My neutrophil counts are still low, .070, so I am still waiting for those to come up. The doctor yesterday said that they wanted me above .500 before they would let me go. The doctors today also expressed that they want to put me on an oral antibiotic when I leave the hospital, so that they can continue to fight what might be causing my infection. So things are looking pretty good overall. The long term prognosis is still good, and the short term problem seems to be under control. I was able to spend a great Valentines Day afternoon celebrating Isaiah's birthday, so being sick didn't hold me back from that. It looks like I'll still be in the hospital for a couple of days, but thats not too long in the big scheme of this process.
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