Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 Hi Lottie, Hi to both you and Jimmy. We sure miss both of you. I haven't been back to MDA since last December. I saw both my transplant doc and the GVHD doc then. They had a little dispute on whether I should undergo photopherisis for the GVHD of the liver, skin, mouth & eyes that I have. Although it is not severe, it is worrisome to them, and bothersome to me. My transplant doc wanted to put me back on prograf (anti-rejection drug) and prednisone, and the GVHD doc wanted to do photpherisis. They actually had a yelling match over it -- quite scary. When I got back home, I got a third opinion from the transplant center in Denver. The transplant doc here thought I should do the photopherisis and get off prograf and prednisone, so that is what I am doing. I've had 16 sessions so far and the liver has normalized. I haven't noticed much difference in the skin, mouth and eyes. Photopherisis will last for a year, twice a week, four hour sessions, every other week. I'll probably return to MDA after treatment for a full check-up. My latest PBPCR was undectable, PET was negative & BMA/BMB was negative. I'm still taking 80mg daily of Sprycel. I couldn't tolerate 140mg or 100mg - horrible GI issues. Ludy had a bi-lateral knee replacement on 22 July. She still has some pain but is walking much better. Hope and pray you and Jimmy are doing well, Love ya both, Don > > Dear Don, > Thanks for the article posting. That is very interesting and informative. Am keeping my fingers crossed that it is implemented soon. I have to wait 6 weeks for my tests to come back. My regards to Ludy. My next visit is October 2, when is yours? Jimmy said hi to you both. > Blessings, > Lottie > > Quote Link to comment Share on other sites More sharing options...
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