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!