Graft versus host disease is a tricky disease. My second transplant was nearly three and a half years ago. The first signs of cgvh showed up about nine months later. It was no big deal. As time passed, the symptoms increased in number and intensity. I've been treated by three oncologists, all directors of the bone marrow transplant units at their centers. I feel well-cared for.
I used to think that after five years post-transplant, I'd be "cured." My doctor in NYC has begun to hint that that might not be the case. I may be on steroids for life, although I'm going to try a taper next week. I thought the Vidaza injections would be short-term, but now he says I'll be doing them forever, or as long as I can tolerate them, which I seem to be.
It seems that my leukemia cells, which still lurk in my body, are crafty buggers, constantly looking for ways to replicate and kill me. I have to stay ever-vigilant. I just hope some of my symptoms will go away or at least lessen in intensity. If the itching would stop, if I could bend over to trim my toenails, if the edema would go away, I'd feel better day to day.
In the meantime, I lather on the lotions, go to yoga and take Lasix. I'm researching natural ways to get rid of the water, and welcome any ideas.