Wednesday, December 16, 2009

One Year Out

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.

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.

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.

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.

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.

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!

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.