Sunday, June 19, 2011


Top Line: the good news - no lymphoma/leukemia detected; the bad news - Graft vs. Host continues unabated. As for the details, it's complicated

On Monday, June 6th, Susan and Bob travelled to Boston for her most recent examination by Dr. Soiffer. Breaking from tradition, where this blog has provided a relatively detailed account of findings and evaluations, today (almost two weeks after the fact - apologies), you'll see only a high level summary. One reason for this is that the details are complicated and explaining them (if I understood them) would be quite laborious, both to write and to read. Another reason is that what most of you reading this blog (if any of you still are) probably want to know is simply: how is Susan doing?

Here's how: Tests reveal no trace of the cancer. Nor is there any indication that the GVHD has attacked internal organs. That's good. That said, however (and without going over every test result), her "numbers," while not at alarming levels, indicate that Susan is not doing as well statistically as she has over the past year or so. This is doubtless a reflection of the Graft vs. Host problem, which in turn may be a consequence of various medication levels having been reduced over the past half year or so. Dr. Soiffer is adjusting the meds, so let's give that a bit of time to take effect, and we'll see. Speaking of seeing, he also wants to see her in another two weeks, which is increasing the visit frequency back down to one month. At least it's better than every week. Remember those days?

And just as a reminder, and without going into the details, Susan's GVHD manifests itself in unpleasant, uncomfortable, and unsightly ways in her mouth/lips, eyes, and skin. Continuing the topical treatments for these affected areas, along with an increase in the systemically targeted medications, will (we hope) lead to improvement and significantly less discomfort. As for prognosis, nobody can say how long this problem may continue. Frustrating, but that's how it is.

Finally, and very importantly, Susan has been receiving emails and other contacts from old friends and acquaintances with whom she has lost touch over the years but who somehow became aware of her condition. Score another one for social networking media. She wants you all to know that she has been delighted and heartened by receiving word from you, so keep those cards and letters coming. However, due to her fatigue (one blood result showed anemia) and her difficulty focusing her eyes for very long on a computer screen or letter, she has been slow to respond back. She does know that you know and care, she does care that you do, and she's doing her best to get back to everybody, but be patient if she doesn't get back to you promptly.

Next communique should be in a little over two weeks.

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