What are treatments for myelofibrosis?

I was just diagnosed as well. Doesn't seem to be much they can do.

What do you mean they can't do much? That doesn't sound good at all! You need to go see a specialist for Mylofibrosis

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.

I’m on Jakafi 5mg to start out.
Blood work done once a week to monitor on the Jakafi is working.

Welcome new members,@vas and @erincarrasco2024. As you may have learned as you start on this journey with myelofibrosis, it is a bone marrow cancer that disrupts the body's normal production of blood cells. It can cause scarring in the bone marrow and lead to anemia that can cause weakness and fatigue.

As @snakebite mentioned, treatments are no curative, but can help manage the condition. Treatment can include active surveillance, transfusions, chemotherapy or targeted therapy and sometimes a bone marrow transplant.

Here are two good articles on Myelofibrosis that explain the different options:
From Mayo: https://www.mayoclinic.org/diseases-conditions/myelofibrosis/symptoms-causes/syc-20355057

From Verywellhealth.com
https://www.verywellhealth.com/myelofibrosis-7562192
You might also be interested in this related discussion
- Myelofibrosis: https://connect.mayoclinic.org/discussion/myelofibrosis-24a025/

What treatment options have your doctors discussed with you? Have you had a positive cytogenetic test run to determine if there is a mutated gene causing MF?

I'm seeing a specialist tomorrow at Mass General Hospital in Boston

Fantastic. If you scroll to the bottom of this information from Mayo Clinic, you'll find a helpful list of questions that you may want to have for your appointment. https://www.mayoclinic.org/diseases-conditions/myelofibrosis/diagnosis-treatment/drc-20355062

EXCERPT
Your time with your doctor is limited, so preparing a list of questions will help you make the most of your time together. List your questions from most important to least important in case time runs out. For myelofibrosis, some basic questions to ask your doctor include:

What is likely causing my symptoms or condition?
What are other possible causes for my symptoms or condition?
What kinds of tests do I need?
Is my condition likely temporary or chronic?
What is the best course of action?
What are the alternatives to the primary approach that you're suggesting?
I have other health conditions. How can I best manage them together?
Are there any restrictions that I need to follow?
Should I see a specialist? What will that cost, and will my insurance cover it?
Is there a generic alternative to the medicine you're prescribing?
Are there any brochures or other printed material that I can take with me? What websites do you recommend?
What will determine whether I should plan for a follow-up visit?

@vas73, I look forward to hearing what you learn tomorrow.

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...

So I am just waiting on a call from the Ottawa Hospital where I will be having this done...meanwhile I've been reading up on the disease to learn as much as possible.
Hang in there....

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?