Top Line: Susan's numbers are fluctuating, with some improving and some worsening. Tests in 3 weeks should give a clearer picture
The visit with Dr. Soiffer was somewhat inconclusive. I won't run down the specific results from the various tests, because too much seems to be changing in either direction in relatively short time frames, and then sometimes swinging back. Susan's next visit, scheduled for November 30, will include a bone marrow biopsy and a PET scan. Not fun, but that should provide a clearer picture. Incidentally, the visit will also coincide roughly with the 6 month anniversary of the transplant, which is a good time to take stock.
Some of the old nemeses are back to varying degrees: liver function issues with, perhaps, some ascites (certainly stomach pains), CMV, along with the skin/mouth issues, and this has required a re-introduction of some medications, all of which makes Susan feel worse. And, of course, the constant fatigue never left. In short, Susan's symptoms and complaints are consistent with GVHD, but the upcoming tests should enable Dr. Soiffer to be more definitive about what's going on.
That said, Susan is getting out of the house a couple/three times a week, although her forays are brief. Dr. Soiffer hasn't put any additional restrictions on her activities -- she can be guided by how she feels and what she's up for (but avoiding crowds, risk of infection, etc.) -- and he does feel she is stable enough to go three weeks until the next visit. So, while not an encouraging report, it's not really a discouraging report, either. After the visit on November 30 is when I'll blog next.