No news is good news at this point

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).

A little bit of graft-vs-host

One writer with CMML wrote that she was on “decitabine 5 days a month for 9 months now. I am in remission but must stay on the chemo”. Later, she said she was “still undecided whether to go with the SCT [stem cell transplant, or bone marrow transplant] or just stay on the chemo.”

I’ve posted on several occasions something that I called “an account of a successful bone marrow transplant”. That individual had the transplant on June 21 – some four months ago. Now, here’s what he’s going through:

Recovery is still ongoing. Last week’s blood test showed increases in white & red blood cells but a decrease in platelets. Doctor wants me back in this week for another blood test. I’m also experiencing some lower bowl discomfort. Doctor prescribed some Prednisone and Dicyclomine. I’ve also removed all dairy from my diet and I feel much better. The possibility exists that there could be a little “Graft vs. Host Disease” (GVHD) going on but, it could also be the prophylactic drugs I take every day causing havoc with my digestive tract. Good luck with the doctors and your decision. Personally, in my case, I looked at chemo as a band-aid and the transplant as the “fix”…but that’s me.

One of the reasons why they go for a “10/10” match on the DNA (HLA) is to try to manage the “graft vs host”. You want some of it, for the “graft vs leukemia” effect. But you don’t want so much that the new tissue (stem cells and blood) rejects its new host body.