UCSF - University of California San Francisco Medical Center. One of the best facilities in the country. It will play a very significant part in my life.
During my research on CMML (Chronic myelomonocytic leukemia), I came across a procedure called a "mild cell stem transplant". In essence, it's a scaled down version of a full stem cell transplant designed for old farts like me, which is the only procedure that offers the possibility of a CURE for cmml. I mentioned it to Dr K (how come I had to bring it up???). While trying to discourage me, he gave me the name of a doctor at UCSF who is at the forefront of this type of procedure. After much hassle and me having to aggresively e-mail the doctor directly, I got an appointment. Again, bring slides, lab results, etc.
What a breath of fresh air. This doctor is both a clinician as well as a researcher and knows which end is up. Dr "Cal" explained all about CMML to me and Arlene - things we never knew, and in a way that we were able to understand. It also turns out that he shares a couple of patients with Dr K. Add another to the list - me. We discussed the mild cell stem transplant. I'm not ready for it yet. Top age to perform -up to 75. Odds of success - 30%. Chances of dying within a year after the operation - 20-30%. Trick to increase odds - do it at the right time. Finding the right donor - imperative for success. I'm not ready for it yet, but I am encouraged. He agreed to take me on as a patient and work with Dr K. He called Dr K and ordered additional tests to rule out certain drugs which can be used in some circumstances. All were negative. I see him every 3-4 months.
I feel very very positive. I have a team of doctors, my blood values remain stable, I feel I am taking charge of my treatment and I don't feel the disease is inhibiting me in any way.
The shit has yet to hit the fan.
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Hi! Just wondering what the USLA doctor told you about CMML. My husband has it ... I go to ask questions of his doctor tomorrow. He got the diagnosis a few weeks ago along with the "no big deal" speech.He sleeps A LOT. We were told his monocyte count and anemia were not significant enough to have that effect at this time.
Thanks, Ski
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