Myelofibrosis

Hello friends!!
I have confirmed MYELOFIBROSIS! Just started taking OJJAARA ABOUT TEN DAYS AGO ! This is post PV L
POLYCYTHEMIA VERA !
I would really like to START A MYELOFIBROSIS chat on this site ! I do not see many posts about this ?
I have not BEEN ON VONJO
SO CAN NOT COMMENT
MY DOCTOR DID MENTION IT
BUT I AM OK TAKING OJJAARA ! I WILL HAVE MY FIRST BLOOD WORK IN FIVE DAYS!! Excited to see the results
Because NO BAD SIDE EFFECTS !! Good friends

My husband found out in January he has myelofibrosis, it was a shock to us. He is 80 and too old for BMT. His cancer doctor put him on Vidaza it worked for awhile. Now he is on Vonjo hoping it would bring his platelet numbers up. He is on his 3rd week and doesn’t seem like it’s working. Today he had his 73rd platelet in fusion. If anyone else has experience with Vonjo please let us know.

@dax1million
WOW ? 72 platelet infusion!!
How low are his platelets?
Mine were 94 last CBC
ALL OF MY OTHER NUMBERS ARE IN RED !
BELOW MINIMUM RANGE ! Started OJJAARA 13 DAYS AGO! GOING FOR CBC ON OCT 14 ! PRAYING ALL MY LABS IMPROVE! I am ONLY
73 !! YEARS YOUNG ! HAD BONE MARROW MALIGNANCIES FOR ALMOST 20 YEARS! IT GOT WORSE IN THE LAST YEAR! I SUSPECTED MYELOFIBROSIS FOR ABOUT EIGHT MONTHS
GOOD LUCK 🍀

@dax1million I did a quick search for you and found several conversations from members who have questions or shared experiences with Vonjo (pacritinib).

Here’s the link to the discussions: https://connect.mayoclinic.org/search/?search=Vonjo+

Feel free to tag any member by clicking the blue reply box or by typing in their full @name…including the @ sign. That way they’ll be sent a notification that they’re being tagged. Let me know if you need help, ok? Hugs.

I posted a year ago about seeing a specialist in Myelofibrosis at Mayo Clinic. Dr. Tefferi put my on a half dose of Ojjarra to make sure I could tolerate it. My platelets were very high as was my WBCs and I was anemic. I had an enlarged spleen. The Ojjarra brought down the spleen size and stabilized my platelets and WBCs and anemia. They were still in the abnormal range but improved.
My annual visit to Mayo Clinic was uplifting for I am still not feeling any effects of the Myelofibrosis or medication. Dr. T decided to increase the medication to the full dose. It's been three weeks and my new tests reveal that everything in my CBC is totally in the normal range for the first time in four years. My biggest relief was seeing my platelets come down as my risk for clots was high.
I hope that gives you some hope for improvement.

Good morning
Diagnosed in June 2025 with Myelofibrosis. WBC and platelets normal. Hemoglobin between 8 and 9. I’m 65. High risk due to mutation SRSF2 along with MPL. Over 20% chance of this turning into AML. I am seeing 2 md at Mayo a BMT specialist and a Clinical trial specialist. BMT MD says best to wait on BMT until a second mutation or other s symptoms. I have no co- morbidities and am in very good health otherwise. I started a clinical trial last week for low hemoglobin. I go to Mayo weekly to see if shot given increases hemoglobin and if successful could be a monthly shot for x years. It’s unnerving to wait on BMT but I understand that the risks with BMT are high and my quality of life right now is ok. Let me know if you have questions or information needs. I will say the mutation you have really impacts the course of the disease

@hanya

Would like to see group. I’m on Jakafi. Still messing around with dosage.

@davi0937
I am so glad to hear you are doing pretty well. I thought you posted that you have CALR mutation but I think I am wrong as you just posted MPL so my mistake. I have CALR 1 , TET2, and DMNT3A. I have normal red cells, normal hemoglobin, slightly high white cells at 13, and High platelets that fluctuate but are always high this past year. I am taking low dose aspirin only. I am not interested in Hydrea which I was offered. My spleen is normal on CT scan of pelvis and bone marrow specialist also told me they do not rush to do them and I do not need one for at least five years and maybe never. I am 66 now.
I hope you get your hemoglobin level normalized from doing the trial you are on. I think you are definitely right that the mutations affect the disease a lot and I was told also that more mutations can be acquired with passing time.
Have a blessed weekend!

Thank you @1pearl - maybe we will do the BMT at the same time 5 years from now! I’ve read the CALR is the least risky mutation- that is good!