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

EPOCH-C

WEDNESDAY, JULY 30, 2008 09:38 PM, CDT
I didn't go to the hospital today, but I got a lot of information. My parents went to meet with my treatment team, and I chose not to go so I could handle other business. I also will be spending a lot of time at the hospital tommorow, so I enjoyed not being there today.
The report back from my parents was that the biopsy last Friday gave good information. The nature of Grey Zone lymphoma is that it has signs of Hodgkins Disease and Non Hodgkins Lymphoma(NHL). My current tumor did not have signs of CD20 cells, which are the marker for B cell lymphoma. So the treatment I went through last year appears to have been successful in eliminating the aspects of my tumor that more closely resembled NHL. Therefore my current tumor is closer to Hodgkins Disease than the previous growth I had last year. However, the doctors are still classifying my tumor as Grey Zone lymphoma and not Hodgkins disease.
The best news about receiving results from the biopsy is that I should be able to start treatment tommorow. I will continue to receive EPOCH, the same base regimen that I received last time. I also received Rituxan last year, but don't think I will be receiving it this time around. Rituxan is an CD20 antibody, and since there is no presence of CD20 cells in my tissue sample, it doesn't appear to be necessary. There was evidence of CD52 cells, which are treated in Leukemia patients with Campath. The plan from my treatment team is to include Campth with this regimen of treatment. Campath has a lot of side effects and reading about them doesn't give me a reassuring feeling. However, my father explained that Leukemia patients will receive about 1000 mg of Campath over the course of their treatment, and I will be receiving only 30 mg per cycle. I am also younger than most Leukemia patients, so the likelihood of serious side effects should not be as big of an issue with my treatment. That was confusing and the best I could describe this issue. The science that goes into this process is truly amazing.
So tommorow is my big day. All of the talk ends, and I get down to curing this bitch for good. I have a Pet Scan tommorow, which isn't a big deal after undergoing two of these in the last year. My veins get filled with radioactive liquid, and some extremely detailed pictures of the cancer in my body will be taken. This should give the doctors an even better idea of what they are dealing with. I have a meeting with my doctors in the afternoon, and barring any unforseen obstacles I will have a PICC line inserted into my arm sometime before or after that meeting. That will leave some tubes hanging from my arm...kind of strange.
I'll start on my first medication, Prednisone, which is a steroid. That drug is legit, and makes me crave food like an addict. It helped me get back to a healthy weight last time around, but since I haven't shrank this time around, I wonder if it will make me put on extra weight. Oh well...there are worse side effects. Twelve hours after I take the prednisone they will start me on the Campath for 12 hours. That will keep me in the hospital overnight tommorow, which is usually not a fun thing. Hopefully I'll be able to sleep through it. After that I'll get my fanny pack and chemo bag for the next 4 days of chemotherapy joy!
Today has brought me several different feelings. I'm happy because I know I'll be able to start treatment right away and not let this cancer grow any more inside of me. However, the reality of all of the crappy issues I have to deal with is finally setting in. Well...I've got no other choice, so here it goes. Thanks for your prayers and support!