Top Line: MAC is improving, mouth is improving (a sign of diminishing GVHD?), but Susan's blood work shows she is anemic.
The most recent visit to Dana Farber was last Wednesday (Oct 12). Dr. Soiffer was not available but Nurse Amy, who is more than qualified, pinch hit for him. Susan also saw Dr. Marty (Mr. Infectious Disease) about her MAC and Dr. Triester about her mouth. Usually, this range of MDs would require dancing around schedules and locations with separate visits to each. In this case, however, the mountains came to Mohammed, with Marty and Triester visiting Dr. Soiffer's examination area where Susan would see Amy. Very convenient and a lot less wear and tear and stress. It's nice to be a VIP. As usual, though, first stop, de rigeur, was Phlebotomy, and then . . .
Regarding lungs: Susan had had a lung scan the week previous to her DFCI visit and the coughing she had been experiencing, now greatly diminished but not gone, turns out to be asthma related. That's a prior condition, and she is responding well to the measures to control it. As for the MAC, it is much improved and Dr. Marty is pleased with her progress. There's no need to adjust the medications, or to see her again until January (barring any unforeseen development).
Regarding mouth: Clinically, Susan's mouth has definitely improved, which Dr. Triester attributes to a likely improvement in her GVHD. However, the mouth doesn't feel better, and that continues to make eating, and therefore adequate nutrition, difficult. The biopsy she had of suspicious tissue on the inside lip/gumline on her previous visit showed no malignancy (good), but rather, an uncommon condition (I can't spell the name; it must be very uncommon) that is sometimes seen with GVHD. It doesn't require treatment at this point and will likely resolve with the diminishment of the GVHD.
Triester speculates that the continuing discomfort may be due in part to this unpronounceable condition, but also to the fact that Susan hasn't had a regular dental checkup/cleaning in two years - that had been put on hold due to the GVHD-inspired state of her mouth and specialized treatments for it - but the progress is such that she is now cleared for a regular checkup and cleaning by a regular dentist. The attention of conventional dentistry may be all she needs at this point to feel as good as she tests.
Regarding recovery: With Dr. Soiffer being unavailable, it fell to Nurse Amy to interpret the morning's blood work and provide the overall assessment. Susan's weight is down, which is not surprising given how uncomfortable it is for her to eat. This substandard intake may be responsible, at least in part, for the most significant reading from the blood work: anemia. Susan's hemoglobin and red count are at levels that would normally indicate a transfusion. However, the anemia may be GVHD driven and without more information, the most appropriate treatment is unclear. Susan is to have some specialized blood tests, which can be done in NYC and the results made available to the Boston team. Once they understand the cause, they will be able to proceed accordingly.
Regarding eyes: There was no need to see Dr. Dana at Massachusetts Eye and Ear. The serum continues to work. Susan's eyes are much improved although certainly not back to normal. Eyes will be added to her dance card for her next visit, scheduled for November 14th (as is the next posting to this blog, although we seem to be running some days late, of late).