Although I was quite ill for four years, I wasn't diagnosed with PMF until 11/19. How much time typically elapses between diagnosis and stem cell transplant???
I was also diagnosed with MF in November 2019. It depends on the scale. Did they tell you your DIPSS score. 0-1 2-3 or 4. I’m a 2 right now and they sent me to a stem transplant specialist. She said within the next year to 18 months is what we may be looking at. More tests to determine. My sister is being tested for a match. For this transplant only a sibling is a potential 10/10 match. If not they go straight to the donor network. I’m getting another bone marrow biopsy this month to see if its progressing or about the same. My only symptoms are fatigue and headaches. Keep a positive outlook and do your research. Ask many questions and don’t hid any symptoms. Any new symptoms should be shared and follow all doctors orders including getting labs on time. Feel free to reach out to me if you want to talk.
The very latest thinking from what I've seen in transplant medicine lectures as late as two weeks ago, is that SCT is a topic discussed almost immediately. Best that everything is laid out and that should the need arise later, things are in place. That said, the risk score will be critical. The current data on survival with MF by risk category and survival with SCT given the same risk categories seem to show benefit in IPSS intermediate 2 and up. As Dr. Verstovsek notes, the sole purpose of the IPSS scale his MD Anderson colleague Dr. Mesa helped develop is to identify the patients with lower than 5 year life-expectancy. That is the group most in need of SCT. The irony is that the later you get in the disease, the worse the outcomes with SCT. On the other hand, why take an up front risk with SCT if your expected survival without it is, say 12 years by IPSS scale? By comparing outcomes between SCT and medical treatment in all risk categories, it turned out the intermediate 2, and high risk had the best survival benefit. Intermediate 1 and low-risk did not meet their criteria as the benefit of SCT didn't outweigh the risk. They noted each center has their own criteria which may differ to some extent.
Thanks, JellyBean63. I don't remember the doc telling me a DIPSS score - I';ll send her the question via her portal. I'm currently moving slightly away from the idea of an SCT. I have a heavy symptom load, am 63, and not responding terrifically to Jakafi. I have asked the Onc several times if we could add an additional chemo, like interferon, to see if I become more responsive.
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