Top Line: Susan’s been experiencing some GVHD for a few months now, but it’s gradually improving.
Susan and Bob did the Boston thing two weeks ago (Jan 5), preceded by a dermatology visit in NYC on Jan 4 as part of the same cluster of care. (Apologies for this belated report.)
Here’s the skinny:
Susan is continuing to experience a return of Graft vs. Host, as described in the November 30 post. You may remember that this is a common occurrence in transplant patients. In its severe form, which tends to happen earlier in the transplant experience, it can be very dangerous. When it occurs this long after the procedure it is less likely to be life threatening, but it can be quite uncomfortable. However, it is also an indication that the transplant is working, which is good.
Without being specific, because the details get icky, Susan’s GVH is manifesting in her mouth and eyes as well as in pretty extensive rashing, particularly around the torso. Rest assured, Susan’s condition is being followed assiduously by her doctors, Dr. Latkowski for her skin, Dr. Jacobs for her eyes, Dr. Triester for her mouth, and, of course, her primary transplant oncologist, Dr. Soiffer. The good news is that the various symptoms seem to have peaked and are finally starting to abate. The study being conducted by Dr. Triester, the one where Susan was given one of two medications currently under review, has concluded and she is now being given both medications, along with topical salves for her lips. Otherwise, it’s various steroidal products along with a number of lotions and ointments for eyes and body rash.
As those of you who are in closer touch with Susan will know, the GVHD has slowed her down, as she oscillates between uncomfortable and very uncomfortable, but it has not stopped her. She’s not always up to it, but she does get out some to do the usual things she likes to do (i.e., shop), although she does need to be very careful with what she eats – Bob’s been enlisted as her taster – as anything at all spicy and even certain unspecified ingredients that you or I might not notice can cause real distress. But she’s coping . . . and, I think, gradually improving.
I promise to blog more promptly after her next DFCI visit.