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).

Watching the CMV numbers

Dr Rossetti stopped by today, and of all the things Beth is suffering from (“one day at a time”), the thing that represents the most danger is the CMV virus, which manifests no symptoms. Nevertheless, here’s why this is dangerous:

Patients who have received marrow transplants undergo ablative chemotherapy and/or radiation. A period of neutropenia and a loss of specific antigen reactivity follow. All transplant recipients have a period of decreased CMV-specific cell-mediated immunity. The next step is unknown; however, patients at greatest risk for CMV disease develop viremia (virus in the blood). The role viremia plays in the pathophysiology of CMV disease is unknown.

Life-threatening CMV pneumonia may develop in immunocompromised patients, with the incidence varying based on the type of transplant received. Patients who receive marrow, lung, heart, heart-lung, liver, pancreas-kidney, and kidney transplants have different levels of immunosuppression. Those most at risk include bone-marrow transplant recipients and recipients of lung transplants. In patients who have received marrow transplants, CMV disease is most likely 30-60 days after transplant. Fatal CMV pneumonia is much less common in patients who have received solid organ transplants than in those who have received marrow transplants. Patients may initially present with an asymptomatic infiltrate on chest radiograph.

Beth’s numbers on this viral infection are going up and down. She is receiving Ganciclovir (“Cytovene”), an antiviral, for this. We should be getting more “titer” numbers on this tomorrow.