“You’re really looking stellar”, Dr Rossetti said to her. And she was very happy to be feeling as well as she was feeling. Her blood numbers were all normal, and have been for a while. (I’ve reproduced some numbers from her blood chart nearby). Notable was the Hemoglobin level of 13.7, and the fact that her protein levels are back to normal. That made her happy.
The biopsies taken from last week’s procedure “looked good, with no significant evidence” of anything serious. She’s still got “a touch of chronic GHVD” (graft vs host disease). The Budesonide she’s taking “topically” deals with the symptoms she’s experiencing in her GI tract.
It’s probably the best possible worlds that she’s got these mild GVHD symptoms, which are well controlled. What she’s got now is probably what she’s going to get at this stage. (GVHD is pretty much brought on by DNA/HLA mis-match with the donor. So the extra lengths they went to, in selecting a donor, are helping tremendously right now). At this point the possibility that she will get further symptoms is about 30% (not 50%, which is typical in the case of having unrelated donors).
She’s still susceptible to infections, although she’s gotten the primary infections that they look for. None of them were serious, but she had “a moderate amount of everything”, and that indeed was life-threatening. But she continues to take an anti-viral infection drug, and her chances of bacterial infection are “way down”.
It was a good report yesterday, after a number of months of bad times.
We have not yet heard the results of the colonoscopy from last week. They are treating it as if she is positive for GvHD. Or at least, they are trying to “get ahead of” it. She’s taking a steroid called Budesonide, possibly instead of something called prednisolone, which I’ve read that other transplant patients take. It seems to have fewer side effects (though she complains it makes her mouth taste funny). Among other things, Budesonide is used to treat inflammatory bowels.
Beth got up and showered to go to church on Sunday, but the shower tuckered her out, and she’s still suffering from a bit of a GI ailment, so she ended up not doing much at all over the weekend. And generally, she’s just been resting in bed and not feeling too poorly.
She has crossed a kind of magic moment in her recovery — she’s now passed out of that “first 100 days”, which are marked by “Acute Graft vs Host Disease” (GvHD) and she’s moved into that period extending from day 90 to one year, “Chronic Graft vs Host Disease”. The two of these are similar, but they have different sets of symptoms. The acute phase is more well defined, and GvHD consists of (a) skin ailments, (b) gastro-intestinal ailments, and (c) liver ailments. The chronic phase is really much less well defined.
From the Chronic Graft vs Host link (which is a 2005 medical paper):
Summary Chronic graft versus host disease (GVHD) remains today one of the most vexing late complications of allogeneic stem cell transplantation. Occurring a minimum of 100 days following stem cell transplantation, approximately 50% of patients will experience some degree of chronic GVHD … Chronic GVHD most commonly affects the skin, liver, eyes or the mouth, however multiple other sites may also be affected. Chronic GVHD and the medications used to treat it result in a profoundly immunocompromised state. Death due to severe chronic GVHD is usually a consequence of infectious complications. Standard treatment for severe chronic GVHD is a combination of cyclosporine and prednisone. An alternating day regimen of these two agents prolongs survival and reduces drug-related adverse events …. The 10-year survival of patients with mild chronic GVHD is approximately 80%, but is less than 5% for patients affected by severe chronic GVHD.
She has an appointment scheduled for Thursday morning with Dr Rossetti, and I believe I’d like to take her to this one, just so that I can ask him what he’s now looking for with respect to this chronic phase. (But as we’ve found out, there are no guarantees).