But when Amy, Briar, my Mom and I were at Dana-Farber a few days ago, we received very encouraging news. Further examination of a recent biopsy showed both male cells (mine) and females cells (my sister Amanda's, the donor) in my skin. Contrary to a previous post, this is a good thing! The doctors explained that Amanda's cells could very well be fighting any residual CTCL. It is called the graft vs. lymphoma response.
In other words, we're hoping Amanda's cells have put on their boxing gloves and are knocking out the cancer cells. If you think that is a strained metaphor, ask Amy how this process is like the situation in Syria! (Editor's note: My theory makes perfect sense.)
The doctors even hesitate to call my recent skin flare a relapse. A true relapse would mean the CTCL had been completely wiped out and the rash was a brand new occurrence. The fact that the recent biopsy shows identical clonal cells to the ones seen pre-transplant lends credence to the newest hypothesis: we didn't get every last CTCL cell during the transplant and those cells reasserted themselves. (Other theories include an atypical form of GVHD, or that I never had CTCL to begin with... yeah.)
What we are betting on now is for Amanda's cells to keep up their attack of the cancer cells, not my healthy ones. I have also been on some form of immunosuppression since transplant, which could have been holding the fighter cells back. I am still on steroids, which is an immunosuppressant but I've been reducing the dosage for a few weeks. It will be several more weeks before I am completely off. There are risks associated with removing prednisone from the equation, like a skin flare or graft vs. host disease. Fingers crossed, we haven't seen any negative effects since I've dropped from 60mg to 20mg. Dr. C. did warn us, however, that once below 20mg GVHD is more likely to happen. There are different grades of severity.
The light treatments (UVB) have been going very well. I've had a total of 9 sessions and my skin looks and feels a lot better. By nature UVB damages the skin. This is actually another good thing, as it can trigger my immune system to attack the CTCL cells more aggressively (granted, my body is also responding to the negative effects of UVB). Since my new immune system is now super-charged with Amanda's CTCL-hating cells, the hope is my body can get rid of all the cancer cells.
If things keep going well, I may be able to skip the donor lymphocyte infusion (DLI), as well as the topical cream (again, written about in this post). The DLI comes with the risk of triggering chronic or acute GVHD. Dr. C. said it happens in 50 percent of the patients. I have been incredibly lucky to avoid this so far, so being able to skip the DLI would be a big win.
Tonight Amy and I got the okay to have dinner at an outdoor restaurant. It was a great tapas-style meal and we felt more like a normal couple than we have in ages (never mind that my wife made me bring along alcohol wipes to clean my silverware). Neither of us could remember the last date night we'd had so we appreciated it all the more, especially when we ordered a second slice of plum cake. Thanks to Aunt Gretchen for babysitting on short notice - you were correct, Briar passed right out!
|Look at us being a normal couple!|
We also got permission to take a late summer (or early fall - holy crap!) vacation if we can find a cabin to rent. Anyone got a place in the Adirondacks they want to loan for a couple days?