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.
Showing posts with label light the night. Show all posts
Showing posts with label light the night. Show all posts
Tuesday, October 27, 2009
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!
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.
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