[Meri T.]

Ray and Dan,
This IS the thread I need right now, since I am living it. Thank you both for posting.
I can identify with all you are going through, but at a much lower intensity and shorter time-frame, since I am only 6 months post sct.

I agree with you both that GVHD management is trial and error. So frustrating, yes, but no post transplant symptoms are alike, maybe similar but not identical.

Eg. My liver flared up, but instead of increasing prednisone, my doctor lowered the dose, in hope that it was the drugs over-working the liver, even though he suspected GVHD!? I think they have to rule out everything before diagnosing GVHD. After 2 weeks of decreased prednisone, in which my liver numbers skyrocketed not to mention nausea, upset stomach and bloated abdomen, he finally decided GVHD and increased prednisone about 4-fold.

Skin cancer, yes. I will now be more attentive to my skin, especially applying skin lotion and skin cream prescribed. Now that's why the follow-up team of nurses were so insistent on showing me how to apply skin care. Dry skin "invites" GVHD in, so twice a day, they insisted, lather yourself from head to toe!

My transplant co-ordinator also advised me to continue the eye-drops, because eyes were very important. I understand where Ray is coming from when he talks about his eyes. Fortunately you are up in the clean air of Colorado, so I hope your environment helps. I am told not to venture outside on windy days, my eyes will be aggravated.

Before the transplant, my hematologist gave me a 60% survival rate within the first 3 years. He said it's normally 50%, but he gave me 10% more because I did not have any co-morbidities or gene anomalies.
After the transplant, when I came down with every GVHD and infection in the book, he said I had it worse than he had predicted, and that I should "complain" more about every little symptom so that they could manage my GVHD better. Funny choice of wording, but maybe he was referring to the patient being more "pro-active" as Dan stated above.

Everybody, keep posting. Sometimes a post can really help someone.
Meri