Top Line: Susan's GVHD remains unchanged but she's now developed MAC, which must be dealt with first
Susan was to have visited Dana Farber (DFCI) today. However, her appointment was moved up to last Friday. Here's why: In addition to her GVHD symptoms, Susan has had a persistent cough for several months now. Her NY internist listened to her lungs and had her get a chest X-Ray, all of which proved negative, but the cough persisted.
She was referred to a pulmonologist who ordered a CT scan, which is more sensitive than an X-Ray. This revealed that she was not being hypochondriacal, but indeed had a lung problem that looked like tuberculosis. Samples were taken for cultures and Susan was put into quarantine, pending results. House arrest and no visitors. This transpired over the 4th of July weekend, of course, which introduced delays in diagnosis and treatment. Essential personnel (Bob and Charley, because they live there), were allowed in, but distances had to be observed (the parties confined to opposite ends of the living space), masks had to be worn, and there was frequent washing of hands, if not gnashing of teeth. The initial test came back positive for TB, but it was not a definitive diagnosis, as other mycobacterial lung conditions could look the same. For certainty, we needed to await the state's TB lab test results, which took a week or so.
While this was happening in NYC, Susan and Bob were in touch with Dr. Soiffer, who doubted it could be TB and mobilized the appropriate Boston docs. He had her come up this past Friday, the day her NY State lab results were due to be available, to meet with the team he'd assembled. Bottom line: it is not TB but MAC (Mycobacterium Avium Complex), also a serious condition requiring a year-long medication regimen, but, unlike TB, it is not contagious.
The three drugs Susan will have to take are being phased in over the next week or so, and the protocol may change based on how well she can tolerate these particular meds, their potential interactions with her other meds, and how effective they prove to be. So, this is far from a walk in the park, but her case is considered to be a mild one, and in and of itself, the MAC isn't making her feel too bad, except for the near constant coughing.
Her GVHD problems persist, manifesting in the mouth, eyes, and skin, but trying new, and potentially more effective treatment for this complex of issues is on hold while her doctors establish and tune the treatment for her MAC. She will be going back up to Boston a week from today (July 18) and I'll report further then.