Tuesday, July 19, 2011

TWO YEARS + 48 DAYS: about MAC

Top Line: GVHD treatment on autopilot while the docs figure out the MAC attack

Susan an Bob were at Dana Farber yesterday to meet with Dr. Soiffer, her transplant doc and case manager, and with Dr. Francisco Marty, an oncological pulmonologist who is addressing the MAC (mycobacterium avium complex) issue.

The main purpose of the visit was to explain the additional medications Susan must now take and to get an early read on how her body is dealing with and responding to the new meds. At this point there are no issues, but it's early days and too soon to determine how effective this starter protocol will prove. Treating MAC, especially for a recovering transplant patient, is as much art as science, and will require continuous monitoring, primarily via blood work, with the possibility of minor to major adjustments in Susan's drug regimen. Once the right formula is in place (and it could even be this starter protocol), Susan should experience a notable improvement in her cough within 1-2 months. However, the medications will likely need to be continued for a year or more.

Susan is scheduled for a followup assessment in three weeks. At that visit she will also see an opthamologist at Mass General who will administer a serum that may help with Susan's eye problems. Yes, we said that tuning the GVHD treatments was being put on hold, but they must nonetheless be continued in a stable fashion (so as not to interfere with the interpretation and adjustment of the MAC treatments). This particular serum, however, has been determined not to have any potential conflicts with the current GVHD or MAC regimens, so it's worth trying now, given how uncomfortable Susan's eyes are.

Return to this blog in 3 weeks for an update on Susan's next DFCI visit.

Monday, July 11, 2011


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.