It looks like I officially have Graft vs. Host Disease (GvHD). Last week Dr. C noted that my liver enzymes continued to be elevated. I told him that I had some itchy rashes on my chest, a chronic cough, and my fingernails had become brittle and were splitting down to the quick. He decided that I had the early signs of GvHD so he put me back on the anti-rejection drug Tacrolimus. Seventy percent of stem cell transplant patients get acute GvHD while 40% get chronic GvHD. GvHD is a condition caused when your donor’s T cells which are mixed with your donor’s stem cells mistake your organs and skin for foreign invaders and attack them. Acute GvHD can often be treated with anti-rejection drugs and usually resolves in one year. Chronic GvHD is more serious, is treated with steroids, and can sometimes last a lifetime. I don’t know yet whether I have acute or chronic GvHD. Maybe Dr. C can answer that question when I see him again later today.
Over the weekend my itchy rash spread to different parts of my body including my chest, back, groin, and legs. The steroid cream Dr. C prescribed for me does a good job of reducing the pain and itching but it’s like playing Whac-a-mole. Just when we get one area of rash cleared up another breaks out. My serious cough seems to be related to and caused by the T cells attacking my lungs. An x-ray last week proved that my cough was not related to a lung infection or pneumonia.
I have now developed stomach problems with burning and indigestion whenever I eat. I love spicy food but this condition makes it impossible to eat anything spicy. What a bummer for a Cajun!
I have noticed that my short term memory problems have not resolved and may be even worse now that I’m back on Tacrolimus. Mary Pat has been very patient with me and has helped me remember to take my medications on time.
My assumption is that the Tacrolimus combined with the monthly treatments of Vidaza (azacitidine) will drop my white blood count even lower than before and cause me to be neutropenic. As a result, I’ll be in isolation for several weeks per month. At least our new apartment has some great views and I will not feel as claustrophobic as I did in the hospital. As I keep reminding myself, this is hard but it sure beats the alternative!