Really we are back on T7, because the MSS is closed for the weekend, but we are in the MSS phase of treatment, so I thought, just go with it.
Beth’s numbers appear to be good: hemoglobin over 10 (she was never there before the transplant), white cells over 4.5, and even platelets up a bit to 52. Her blood pressure (treated) was 122/80, though she was still complaining of pain and itchy skin, both likely from GVH. She is getting the IV antibiotic Daptomycin, along with some magnesium. Barring any complications, this should be the routine for a while.
I went in to work today, so I didn’t see it, but Beth said that one of the doctors came around with a whole group of residents who all took a look at Beth’s mouth sores (Those very ones in the photos below). The mouth sores are very uncomfortable for her – they’ve contributed to a bad sore throat that prevents her from eating. She’s still got lots of bone and muscle pain – “your whole body was burned from the inside out”, and she continues to have elevated blood pressure levels, though they are giving her Norvasc to bring that down.
It seems as if she will be going home tomorrow. We’re still waiting to hear from another doctor tonight, but she’s been off the antibiotics, and she hasn’t had a fever. Her white blood count was 4.57 this morning, which is somewhere near the normal range, and her hemoglobin was hanging out around 10.0 – both of these numbers are stratospheric for her, but only the white cells are hers (the hemoglobin is left over from some transfusions she had over the weekend).
Beth immediately responded to the Vidaza today, in a negative way. After two transfusions in recent weeks, she has been feeling about as well as she has felt in months, over the last few days. However, the Vidaza treatment reminds her that it really is a kind of “chemotherapy,” and the “cytotoxic” effect just knocks her on her butt. Back again are the diarrhea and the body aches and the desire to sleep all the time.
Yet the other thing that Vidaza does is to “change the genes” in the blood cells. Enables the blasts — “baby” undifferentiated blood cells — to differentiate and become normal healthy cells.
There are three major cell lines in your blood: red (hemoglobin), white, and platelets. Beth’s red blood cells are consistently low and they don’t seem to be responding. White counts and platelet counts are low but holding steady. This is one of the good effects of the Vidaza. Neutrophils (white cells) are low but holding steady. Monocytes (another white cell) are high. That’s one of the reasons why this is “chronic myelomonocytic leukemia” (CMML).
The intention is to have her bone marrow in as good a shape as possible in preparation for the transplant. Dr. Jalil said yesterday he wishes her hemoglobin would have shown some signs of recovery by now. But, he says, “after only two treatments, things look good.” If her hemoglobin still was not responding after three, four, five treatments, “we would be a little worried”.
What if it doesn’t respond this time? He says they’ll still go ahead with the transplant. My sense is that it’s the only real option. If she were 75 years old, they’d continue with the Vidaza and blood transfusions so long as they made her comfortable. But the prognosis for this disease is not a good one. They’ll want to do the transplant, to wipe the slate clean anyway.
We’ll find out more about that at the intake meeting today.