@carolgk
Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is due to a mutation of the JAK 2 gene. I still experience some itching, but it is under control now. My main issue now is the continued fatgue. I try to get things done in the morning and rest in the afternoon. How are you doing with the Vonjo medication?
@joaniech2004
Joanie,
I have been in Connect for a few months reading since I was told I need a BMT for Myelofibrost due to a JAK2v617f mutation. “Listening in” on the BMT group has provided an enormous amount of information on the process. I am very sorry to hear that you have not found a match.
I will put you in my prayers for finding a match.
Lorie
I was recently diagnosed with Mylofibrosis also.
My hematologist has recommended that I have a
Stem Cell transplant. He said that it is the only cure for me and that it would be a long process to go through...
@tamijulien
I just got back from Mayo Clinic in Phoenix where I saw wonderful hematologist oncologist Dr. Cecilia. Li I’m waiting to see if I have converted to something else possibly MF I’ve had essential thrombocythemia for 34 years with some conversions to PV as well. My blood counts are all over the place recently I’ve done everything I possibly could to stay healthy with supplements, functional doctor visits, Acupuncture Healing Touch I feel I’ve been struggling to just keep myself alive now with this possible diagnosis I have wondered about stem cell therapy. Where did you go where they would possibly consider that? Thanks for your post and I hope you’re doing well
@tamijulien
I just got back from Mayo Clinic in Phoenix where I saw wonderful hematologist oncologist Dr. Cecilia. Li I’m waiting to see if I have converted to something else possibly MF I’ve had essential thrombocythemia for 34 years with some conversions to PV as well. My blood counts are all over the place recently I’ve done everything I possibly could to stay healthy with supplements, functional doctor visits, Acupuncture Healing Touch I feel I’ve been struggling to just keep myself alive now with this possible diagnosis I have wondered about stem cell therapy. Where did you go where they would possibly consider that? Thanks for your post and I hope you’re doing well
@leene808
Mayo is a great choice for next steps on MF. Depending on your diagnosis they guide you through your choices. A stem cell transplant is one choice. Best wishes- Betsy
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@joaniech2004
Joanie,
I have been in Connect for a few months reading since I was told I need a BMT for Myelofibrost due to a JAK2v617f mutation. “Listening in” on the BMT group has provided an enormous amount of information on the process. I am very sorry to hear that you have not found a match.
I will put you in my prayers for finding a match.
Lorie
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1 Reaction@tamijulien
I just got back from Mayo Clinic in Phoenix where I saw wonderful hematologist oncologist Dr. Cecilia. Li I’m waiting to see if I have converted to something else possibly MF I’ve had essential thrombocythemia for 34 years with some conversions to PV as well. My blood counts are all over the place recently I’ve done everything I possibly could to stay healthy with supplements, functional doctor visits, Acupuncture Healing Touch I feel I’ve been struggling to just keep myself alive now with this possible diagnosis I have wondered about stem cell therapy. Where did you go where they would possibly consider that? Thanks for your post and I hope you’re doing well
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2 Reactions@leene808
Mayo is a great choice for next steps on MF. Depending on your diagnosis they guide you through your choices. A stem cell transplant is one choice. Best wishes- Betsy