Well it's been a month since my last post, and as many of you know, not a good month.
Just a few days after I wrote my last post, my lymph nodes became active again and swelled up. My doctor said this was "very concerning" since it had only 3 weeks after the high-dose chemo. She said my cancer seemed chemo-resistant and therefore, the whole stem cell transplant plan would not work. I'm not sure if we caught her on a bad day or just off-guard that this would happen, but when I asked what the options were, she seemed to struggle for an answer. The only plan seemed to be to try different chemo treatments...until...?? That was a very, very bad day for us.
Over the next week or so I went through another barrage of tests including a bone marrow biopsy, a lymph node biopsy and a CT scan, to confirm whether or not the disease really had returned. While waiting for the results of all those (almost 2 weeks), Wayne and I kept holding on to the hope it was from something else, since I didn't have any other symptoms.
But then on the weekend of May 7th, I started getting chills/fevers - not a good sign. I was admitted back to Tom Baker where they blasted me with several different kinds of antibiotics and Tylenol for two days but the chills/fever just got worse. On the Monday, my doctor said the biopsy confirmed the return of the disease, and given my current condition, we should start me on a new chemotherapy that day. So on the 9th I started a protocol called GDP, and her plan was to give me 6 cycles and hope this flavour of cocktail would put me into remission.
In the meantime, since that very, very, bad day, we got our fighting spirit back and started doing some research to try and find other treatments, or doctors or clinics that gave some alternative to what we dubbed my doctor's "sunset" plan.
One of the first things I did was contact Best Doctors, a consultative second opinion from a panel of doctors and experts around the world. This is a benefit offered through my work, which is awesome. It's been a bit of administrative work with release forms and getting all my medical records sent to them, but they should have everything on Tuesday and will send to a doctor at Harvard for review. That doctor then pulls in whichever expert they feel is necessary for the consult.
From a lot of Googling and help from family and friends (you know who you are!), I've been in touch with doctors from Hong Kong, Boston, New York, Toronto and Houston. Some of these are leaders in their field of research or new treatments for lymphoma. There are several irons in the fire, but two discoveries seem promising so far. First, is a differing opinion that if we can get things under control with the GDP, then an allogeneic (from a donor) stem cell transplant is still an option. The reason an "allo" is recommended over an "auto" (my own stem cells) is because my stem cell collection was contaminated. Even though the percent was really low (0.04%), they can not guarantee it was cleaned 100%. Obviously the risk of re-introducing chemo-resistant cancer cells is not a good risk to take.
Of course there are risks with an allogeneic transplant too, and quite serious. The biggest one is developing Graft vs. Host disease (GVH), where the transplanted stem cells aren't happy with the native organs and environment. Kind of like the reverse of a body rejecting a transplanted organ. However, because my brother Ray is a 10/10 sibling match, the risk of developing serious GVH complications is lowered. If we do go that route, then there is a new immuno-therapy treatment from Baylor College of Medicine in Houston, where they would take my brother's blood and create these modified t-cells that would identify and kill any future cancerous cells. These modified t-cells would be infused into me after the transplant. I discussed this therapy with my doctor who did not see any negative consequences to trying it.
So, right now, I'm on a new chemo regimen in hopes we can get things "under control" (I'm still trying to understand what my doctor's parameters are for that) and then we would have a decision to make. Keep going with the GDP and hope this is the flavour that works, or go for the stem cell transplant with Ray's cells, plus this new T-cell therapy which would hopefully amount to a cure of sorts. There may be other options too, and I'm waiting on the response from both Best Doctors and a doctor from NYU.
I have to say that doing all this research, trying to contact these doctors, corresponding with and getting my medical records to them is practically a full time job. But it definitely helps to feel empowered and proactive about my future, and right now having more information is better than not.
It's been a roller-coaster month. I've been in and out of the hospital several times and still go there several times a week for treatments, appointments or tests, but I'm happy I'm living at home and appreciative that right now, I feel good. The fight has gotten a lot tougher, but I know I'll win and get through this. There's a condo with a pool waiting for us in Atlanta.
