On Jakafi mutations …A confession.
The MPNforum Special Report raising questions about Jakafi and the emergence of deadly mutations created concern, awareness, panic. It wasn’t supposed to be like that. It was a factually true Report, fully vetted by the experts. But it wasn’t even mostly about mutations.
Here’s the confession: https://mpnforum.com/on-jakafi-and-mutations-a-confession/
And an apology.
Comments on: "Confession" (5)
Zhen, As usual, I read your articles, reports with great anticipation. I appreciation your sense of balance and apology. I did not think you needed to apologize. I was worried about the Jakafi bad potential; but I’ve been worried about ALL the medical and diagnostic information since my dx with PV in 1999. Now I have MF since 2011. I’ve been on Jakafi for almost 2 1/2 years. Need transfusions 3 times a month. (I’m afraid of the reactions from that!) I think opposing viewpoints are good in the way it can promote research, study, trials, etc. (Think good/bad about peanut butter, chocolate, now coffee!)
I, too, read and considered SCT 4 years ago, when I was 67. Then I spoke to a women (MF) (perfect match from her brother) in CA who had just had one (age 55); She told me of the “hell” she went thru, and would not do it again if it failed.
Of course I re-evaluated my thinking and talks with my local hem/onc and a specialist in Philly. We all concurred. I’m not going for a SCT. I arm myself with knowledge from your articles, medical magazines, MPN Forum, CR&T, Patient Power, to have these important conversations with my doctors.
Thank you so much for all your efforts, the good and the bad and the hopeful!
Thank you Karen for your thoughtful, sharing comment. It is true that the prep, the induction chemotherapy prior to SCT is distressing and exhausting. And true too that there is a risk of failure, of relapse, of GVHD. As part of MS3T (MPN Stem Cell Timing Transplant Taskforce) I plan to go deeper into the timing and the risk/benefits of SCT and write about it. It’s not that I favor SCT over other therapies or even that I’m eligible for a SCT myself. When I wrote I lost two friends due to SCT delay, in part due to the success of Jakafi in masking the transformation of MF to AML, I meant two good friends, men I miss all the time. We all lost dozens of MPN friends in the past few years for the same cause. In part those deaths were due to the same hesitation and fears you and I share about SCT, as well as imprecise guidelines for the proper time to undertake the procedure.
For the lo-risk and high-risk MF patients among us, the lack of guidelines is not significant. It’s either “not yet” or “right now.” For the great majority of us in the middle, guidelines can provide a clear view of the ticking bomb within. What we know with absolute certainty is transplant results are vastly more favorable when done early in the disease process rather than late.
If we can save even one of us from the rigors of advancing AML, provide a second chance for a productive, creative life, then the work of fashioning and clearly communicating SCT timing guidelines is worthwhile. Now…as to peanut butter, coffee and chocolate I just think life may be short but without coffee and chocolate it would be interminably long. Keep well and stay in touch, Karen.
As usual, very provocative Zhen. You write so beautifully. I think Kroger would rather be known as a transplanter than a
hematologist. All the best Dick
Sent from my iPhone
Thank you, Dick. But whatever Nick is I’ve been studying and relying on his basic Blood and Leukemia; papers on MF and SCT for so long he could be an orthodontist or carpenter and still be legendary in this field.
But of course you’re right and I have him listed among the hematologists in the MS3T roster. Even though he’s board certified in hematology he’s Professor of Medicine and Medical Director of the Department of Stem Cell Transplantation at the University Medical Center Hamburg-Eppendorf, Germany. Glad you picked up the error.
Zhen… I admire your honesty and humility. Thank you. Bonnie