It's been a month since my last note, and Nancy's recovery was smooth and uneventful until about two weeks ago, when she started getting a skin rash Sure enough, this is graft-versus-host disease, or GVHD.
This one of those bad news - good news kind of things. Let me reassure you right away with some good news. Yesterday she started a new course of treatment with prednisone, and she is responding very well to it. Her doctor's expect her to recover completely, and we hope that the symptoms and manifestation of GVHD go away quickly, within the next few days.
GVHD is very uncomfortable, and occasionally life-threatening. Nancy has an itchy rash and reddened, puffy skin everywhere, chapped lips, and some difficulty eating and swallowing. She honestly spent a miserable weekend, even with the first round of medications (corticosteroid creams, anti-itch meds) that she got last week. The disease happens because her new immune system is getting more active as her doctors reduce her immunosuppressive drugs, and the immune system (the graft, or bone marrow transplant) has attacked her (the host).
Her doctors have been expecting this, and told us that every AML patient they have treated with this kind of transplant has experienced GVHD. The silver lining is that the disease shows her new immune system is working well, and it should eliminate any remaining leukemia in her body. People who manifest GVHD have a better chance of remaining cancer-free. Another piece of good news is that this is the acute form of GVHD, which should not leave any scarring or permanent changes in her skin. She should fully recover, but will be on prednisone for months, and will be extremely sensitive to sun and perhaps other allergens for the rest of her life.
I've honestly been worried sick as we've been dealing with this, but feel vastly relieved today as her rashes are starting to vanish, and she feels better.