Three and one half year update (Day +1281)
Someone asked why I always list the number of days before and after transplant on the blog. It comes from the Vietnam era when men fighting in battle counted down the days until they could go home. At least that is the way this started. We counted days until the battle began prior to transplant. Now we count up the days from victory.
Jackie is doing reasonably well. I'm happy to report she has conquered the Shingles. Of all the things that took place in this long process Shingles was the most painful. It is not something you would wish on anyone! She still has some minor twinges but it seems to be mostly behind us.
We were at the Mayo a week ago for her monthly visit. While there we met with the usual battery of doctors. She also had her monthly photopheresis treatments (2 days, 2 treatments). These have become almost routine. They seem to be helping the GvHD but it is hard to know for certain.
It seems we have finally settled on a dosage for prednisone. She takes 50 mg on one day and 10 mg on the following day. Anything less than this causes her GvHD to flare. The docs would like to get her to a lower dose but it doesn't seem possible. The high steroid intake is causing her to suffer from osteoporosis. The steroids cause a drop in calcium and a decrease in bone density and an increase in her alkaline phosphatase levels. To counter this she takes vitamin D along with big doses of calcium. That still isn't doing the trick. They believe the GvHD in her gut doesn't allow for effective absorption so they will begin giving her IV calcium ever 3-6 months.
The biggest problems come from the skin cancers. Each month it seems that a new one pops up. All have been on her arms and hands. Each month she requires a biopsy or excision. This month she had two skin punch biopsies on her left arm and an excision of a previous biopsy on her right arm. The excision was about the size of a silver dollar coin. Because the layers of skin on her arms are so damaged from the GvHD it was not possible to close the wound. It simply would not pull together. Therefore, the docs were forced to leave it as an open wound to heal. This lengthens the healing time from days and weeks to months and leaves open the possibility of infection at the wound site.
The good news is that a lot of the sclerodermoid GvHD issues seem to be improving. The skin tightness continues but seems improved. The "plastic" patches have also improved. Perhaps this is due to the photopheresis.
The docs continue to tell us they expect the GvHD to eventually "burn out". There are very few patients in the world who are 5+ years out of mini allo transplant. The best data seems to come from Germany and suggests that after about 5 years the body learns to cope with the new stem cells and GvHD improves.
So, with this in mind....I'm wondering if it is time to begin counting DOWN again!
Bruce & Jackie from Pryor