I think another concern is long term or permanent bone marrow suppression. I’ve spoken to someone who did AVO and is still struggling with low red count. I wonder if there should be more scrutiny on patient fitness or risk of CHIP.
Dr Tefferi!!! This podcast should be required for all in the Hematology realm. Dr Tefferi, I want to thank you for your excellent work specifically as it pertains to Myelofibrosis. I do have a wonderful MPN Specialist who saw that my symptoms were warranting an updated BMB which showed MF 2-3. I’m a 62 female who’s been battling an MPN for over 30 years and begging to get a Stem Cell Transplant because my PV caused difficult life altering symptoms. So once the results were back, my wonderful doctor said the soonest we could do it is 3 months and I said “I’M IN!” I may be the only person on the planet who’s excited to get a transplant. Obviously there’s risk but I’d much rather have a chance of being cured than a crappy 1-3 years. Thank you for making this available. I appreciate you all.
I hope I have Doctors like her here in Canada. Awesome discussion. Thank you. I am going into Princess Margaret Hospital in Toronto this August for MUD allogeneic transplant for PMF. 70 years old, healthy and fit and currently responding well to Momelotinib at 200 mg daily.
I was enrolled in manifest-2 protocol in Rome. My life became miserable because I was always ill. I stopped after the virus herpes zoster was riactivated and I suffered a sever facial paralysis. After a year I already have a parcial paralysis and balance problems beacause the VII and VIII cranial nerves was severy injured. I accepted to be enrolled because the doctor told me that otherwise I was going to die for leukemia. That was not true! I didn't have the intermediate-1 grade of mielophibrosis! I only had pre-mielophibrosis! Now I am well cured for pre-mielophibrosis in another roman hospital, only with oncocarbide and booldlettings when necessary, exactly as before I was enrolled in Manifest-2 protocol. I have never have anemia, sweeting or other sintomi, except a bit of fatigue. I've spent 10 thousand euros for the cures. Now I've filed a lawsuit against the hospital. But the law in Italy is really slow and I'll wait 10 years to have justice. The bad news is that I am hughly and parcial disabled, the good news is that I'm not going to die soon as I was told by the doctor who enrolled me in manifest-2!
Started DVTD. Within weeks suffered peripheral neuropathy. Velcade and Thalidomide stopped. Daratumumab and Dexamethasone took my Paraprotein from 79% to 0%. Daratumumab is a wonder drug.
An excellent and informative podcast, your expertise , enthusiasm and humanity gives everyone hope in the future, thank you all .A grateful MCL patient (diagnosed 2009)
