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