Back in the Clink
Jackie is back in the hospital. Nothing serious! Her graft versus host disease (GvHD) gradually became worse. It finally got to the point it was very painful. We flew up for our usual 3 month checkup and the docs felt the best course of action was to get her into a hospital environment to treat the painful skin rash. The rash had gotten to the point of causing blistering. Due to the inflammation Jackie was also running a low-grade fever much of the time.
The good news is that her blood counts are normal in all respects and there is no sign of CLL. This is likely a thing of the past. After two years with no relapse she has a very good statistical chance of being cured of her original disease. Of course the GvHD is no fun and needs to be taken seriously. The docs tell us they see the average patient needing three years of immunosuppression after transplant. They tell us that most patients with chronic GvHD tend to see gradual improvement. We certainly hope this is the case with Jackie. At this point there seems to be no involvement of GvHD with other organs. They performed a pulmonary function test this morning. We don't have results, but I don't think anything of concern will be found.
They are changing Jackie's meds. She will continue with Prednisone at a slightly reduced level. She will alternate days on and days off. One day she will take 30 mg the next day she will take nothing. They hope to get her body to produce more natural steroids. In addition they will be decreasing her Cyclosporine level to 50 mg per day and replacing this immunosuppressant with CellCept. CellCept is newer and far more expensive. They believe it will work better. If this doesn't work there are several other treatments that are possible. It is possible they can treat the GvHD with some of the same chemo agent they used prior to transplant (Rituxan and Pentostatin). They also have a UV light treatment that is only available at the Mayo Clinic (UVA 1B). Finally they have something called Extracorporeal Photochemotherapy (ECP). This involves removing your blood and passing it through an apheresis machine and shinning a UV light on the cells as they pass by. It somehow improves GvHD response. I'll have to research the issue further if this becomes an option to better understand how it works.
In any case, Jackie is doing well. Hot oil baths with full body wrap moisturizing treatments sounds like a spa treatment to me! I asked the nurse when they had scheduled the Asian hot stone message:)
Until Later...
Bruce and Jackie
From The Mayo Clinic
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