What are treatments for myelofibrosis?

JAK2 Myelofibrosis
I have been on Ojjarra for almost three months. It is a half dose (100mg) per day. Next month I will go on a full 200mg dose and will report back.
I have not experienced any adverse effects to date. My spleen pain has gone away. My white count is now upper normal. Still waiting for my platelets to stabilize. They range from 600,000 to 900,000. Maybe the full dose will help with that.
Other than that I feel like nothings wrong. I’m still shocked that I have this disorder.
I feel confident in the hands of the Mayo Clinic expert in Primary Myelofibrosis, Dr. Teffari.

Hi @sharonm2023. Welcome to Connect. I promise you won’t be alone here! There are quite a few members who have multiple fibrosis or one of the other blood conditions associated with the CALR mutation such as polycythemia vera or essential thrombocythemia.
You may have already read the links to articles I provided for @rhollis in this comment… https://connect.mayoclinic.org/comment/1201587/

If not, take a few minutes to read through.
There are medications available to slow the progress of the fibrosis to the bone marrow, but ultimately, a bone marrow transplant remains the only cure for this condition. A good friend of mine, whom I met while we were both having our bone marrow transplants in 2019, had MF. She is now 5.5 years post transplant like me, and is doing well. Perfectly healthy and no signs of the MF returning.

I know you’re concerned about your hemoglobin levels after you’re out of the clinical trial. That can be a side effect of the disease itself. With a clinical trial you don’t know if you’re on a drug or a placebo. So your blood numbers may not change after you’re out of the trial if you’re on the placebo. Right now, active surveillance would be appropriate until you know. If your numbers start changing in the future and your current hematologist is reluctant to explore any other treatment options, it may be in your best interest to seek 2nd opinion with a larger teaching/research hospital such as Mayo Clinic, Cleveland Clinic for examples…
In the meantime Jakafi is one of the standard medications for MF and has a good track record. Are you having any side effects from the medication?

Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for a cure with certain blood cancers like Myelofibrosis. I had a transplant for AML five years ago. I feel amazingly fit and healthy…best yet, being cancer free for 5 years!
It is a long, challenging process but quite a few of us in the forum have had a bone marrow/stem cell transplant and we’re all here to help you through your journey when ready.

Is there any specific information I can help you with?

Thank you for the comments--I will check out the article. The clinical study I'm on is not a blind study--So I am definitely on the drug. The study is being conducted through Mayo. I am hoping once the study is done I can transfer my care to Mayo, in the meantime I am being seen at CentraCare in St. Cloud. This is where my Jakafi is prescribed and as you know it is expensive the kind pharmacist has found a grant to help with costs. This was not so at Mayo--the pharmacist there was not helpful--probably too much going on.
Sorry I'm rambling, to answer you question about Jakafi--yes I have side effects, diarrhea, leg muscle spasms. night sweats and low grade headaches.
The good news is my hemoglobin was at a 10--this last check.

I am Phase I (no fibrosis yet), and my Dr has recommended Interferon. There is some evidence that it prevents disease progression in some patients. I have not yet started treatment (I was just diagnosed 12/16) but am likely going to try this course of treatment. Pegasus is approved for use in MF patients, Besremi is in clinical trials.

As far as I know there is no cure for MF. When I was diagnosed I had just turned 60 years old. They told me at Stanford Medical Center that the average life expectancy was 5yr. Treatments were for the most part directed towards symptoms. I tried one route for a while and then switched to a doctor that thought a different path was better. He has moved me around from this to that to something else. Some worked better than others. Some had side effects that were a bit unpleasant, but the overall effect was worth it. After a long run of taking both Dacogen and Vonjo, things reached a point that we needed to stop the Chemo (Dacogen). Within the month things turned around dramatically. My CBC's came up to low-normal. I didn't need any more Blood Transfusions, and my twice a week routine became once a month. This went on for a year, and then turned back around and started dropping very rapidly. Numbers were falling as fast as they could test them. That was about 2 months ago. They started the Dacogen infusions again and put me on Ojjaara. My need for Blood Transfusions has returned. I have a new set of side effects with the Ojjaara vs the Vonjo. I get really dissy with the new drug. I will be 77 yr old in October. So... don't say that they can't do anything about MF! I'm still here. As far as I can see, my quality of life is just as good as most of the other OLD PEOPLE I see fumblin around. Don't get discouraged, and stay positive. I've seen a few "Miracle" drugs come down the road, and for the most part each one has been a little better than the last.

Just a update on my post of Jul 10,2024. It is now1/31/2025. I am still taking the Ojjaara. I take nothing else. I've had a CBC every week, and they are all great! Who knows how long this will last, but for now things are great!