Here is short update on my most recent blog post, following a meeting with UCSF this week. My doctor, Dr. Smith, discussed my case with the full UCSF transplant team. There are no definitive studies of my specific case of graft-versus-host-disease where donor B-cells produced in my bone marrow attack healthy blood cells and so no standard protocol for lines of defense beyond Prednisone, which seems to moderate the donor B-cells but leaves me more immunosuppressed and is only a short-term solution.
The new consensus plan is to keep monitoring my blood counts weekly and to start an oral chemotherapy drug called Methotrexate to suppress the B-cells as the Prednisone is reduced — the goal is to reduce the Prednisone (and Tracrolimus, which suppresses T-cells) to zero. I received infusions of Methotrexate in the hospital after my transplant. The UCSF consensus is that an oral supplement could moderate the B-cell attack on healthy blood cells longer-term and may avoid a splenectomy. Phew!
In the meantime, I am getting outside for daily hikes of 5 - 7 miles. I feel pretty good despite the insomnia and shaking that is inevitable on high dosages of Prednisone and the seemingly endless isolation from COVID. I will update this blog in about a month as UCSF begins to implement the new plan and, hopefully, I am vaccinated.
All the best,
Steve
Hi Steve, thanks for this update and the positive news that a splenectomy may be avoided. Very best of luck with the new treatment plan. Great that you can get out and about on the beautiful trails near to your home. Sending you and all the family love & positive karma from KL.
ReplyDeleteMary & Breen xx
Stay strong💪 , stay safe n healthy. Wish you getting better n better. From: Chan
ReplyDeleteThank you for sharing your journey with us and it is good to hear that the splenectomy has been put off. Impressed with your daily hikes and hoping the new plan is a success. Love to you all! xo
ReplyDeleteThanks for the update Steve. It sounds like you have a great team at UCSF working hard together to figure out the best course of action! And keeping your spleen would be a huge bonus! :)
ReplyDeleteIn the meantime keep enjoying those hikes! Take care and stay safe! Much love. xx
Hi Steve - we are really glad to get this update, and also to learn that you are back to taking your long walks. Indeed, the UCSF team seems great, and you are such a great patient. We look forward to learning more as you navigate this next phase of your treatment. Much love from the Hottliebs.
ReplyDeleteThank you for including us in your journey, Steve! Hoping that the new plan will makes you feel better! Meantime, indulge in your family and friends love, from near and far. Sending lots of love from Singapore ❤️
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