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What are treatments for myelofibrosis?
Blood Cancers & Disorders | Last Active: Apr 15 6:55am | Replies (133)Comment receiving replies
@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?
Replies to "@carolgk Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is..."
@joaniech2004
Good to hear you are much better and itching is under control.
Again, like you I tried to do things in the morning because after lunch I was in bed. The fatigue and breathless episodes made everything I did much more difficult. By afternoon I was in bed resting. Slept 10-14 hours a day, a lot for me.
I am doing great and consider Vonjo to be a miriacle drug. I've been on Vonjo for 7 weeks, feel better than I have in 3 years. I am active and do not feel exhausted all of the time.
First, my shortness of breath improved quite a bit, is gone now.
My spleen size went down, I can eat without discomfort.
The awful fatigue was slower to change but dramatically better in a month and gone by 6 weeks.
I have had only 3 night sweats in the last 4 weeks.
The Itching has improved a little, mostly the intensity but did have a glorious 5 day break,
Bone Pain is not as frequent but seems more intense.
Im so thankful to have this symptom improvement before my BMT. Hopefully that will occurr in May.
Best of luck to you. Take care
@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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@joaniech2004
Hello MF FRIENDS ! At this point I have secondary HIGH RISK MF AFTER HAVING PV FOR MANY YEARS!
I had brutal burning of skin for many years! A prescription called HYDRAXYZINE helped a great deal! Speaking with your doctors about this.
I was on JAKAFI for coupe of years ! It brought my blood numbers down to extremely low level!!
So keep an eye on that !
Now it’s difficult to bring my numbers back up to normal levels! I am on OJJAARA FOR THE LAST SIX MONTHS! Very slow progress. All the itching burning 🥵 stopped once my blood levels took a dive !
Wanted to share my experience in effort to help ,
I hope you all who have been affected by blood cancers , keep trying and keep educating yourself!
I feel bad for you all who had to endure grossly incompetent and careless doctors !
Blessings to all of you
Hanya