Top Line: a Touch of GVH, manifesting as rash, but not serious
It wasn't bound to happen, but it's not surprising that it has. And don't worry. We've got your back. Also your eyes, mouth, and front. That's the official assessment from the good Dr. Soiffer, per Susan's visit to DFCI yesterday. In short, she has developed a mild to moderate case of GVH (graft vs. host), which has manifested as a body rash, mouth sores, and inflamed and glassy eyes . In case you don't remember what GVHD is, you can scroll down to the bottom of the blog where you'll find a description of the disease, the transplant procedure, and the risk factors in doing the transplant.
The condition isn't fun, but it isn't debilitating. Maria and I visited with Susan and Bob this past Saturday in Spencertown, and she was up to hosting a small family gathering (Leslie, Rudy, and John Henri Richardson, Nate and Callie, Charley Siegel, and us). With her body covered, as it was, you wouldn't have known.
That said, the condition has to be treated and watched. So, here's the summary from the DFCI visit: blood work results were basically good, except for a slight elevation in the liver numbers. Dr. Soiffer had Susan see an oral oncologist on staff, who prescribed a lip cream and is deciding between one of two different mouth rinses that are currently being evaluated in a clinical study. Susan will need to be enrolled in the study in order to receive the treatment, and that registration (which may require another trip to Boston next week) is currently in process. The good news about this study is that it does not compare the treatment to a placebo but rather pits the two medications against each other, head to head. So, Susan will be getting something, whatever it is, that is expected to work.
For her eyes, Susan still needs to see an oncological opthamologist (which will happen at DFCI if she returns next week, otherwise in NYC), and for her body rash, her own dermatologist (who did an oncology rotation at DFCI). So, there are still open issues, but a plan is in place to address them. In the meantime, please realize that while her condition needs to be treated and followed, it is not considered life threatening. She is uncomfortable but not miserable. It is not the "yechy-ness" of old.
Susan will need to return to DFCI in about a month as part of the study to assess the efficacy of whichever mouth rinse is prescribed for her. Hopefully by then the rash, and the GVH, will have subsided, if not disappeared entirely. You can read about it here when it happens.