1. < Blood Cancers & Disorders

What are treatments for myelofibrosis?

Posted by vas73 @vas73, Jul 9 10:45am

What are treatments for mylofibrosis! I was just diagnosed with it?

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tamijulien | @tamijulien | Jul 12 3:40pm
In reply to @loribmt "Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for..." + (show)
@loribmt

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?

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Hi Lori,
Thanks for making contact with me.
At this time I am waiting on a call from the hospital that is looking after my case. Once i have my initial visit, I know that i will have lots of questions. So in the meantime, I am browsing other people's posts to get an idea of what the procedures are...thanks

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Lori, Volunteer Mentor | @loribmt | Jul 12 6:04pm
In reply to @tamijulien "Hi Lori, Thanks for making contact with me. At this time I am waiting on a..." + (show)
@tamijulien

Hi Lori,
Thanks for making contact with me.
At this time I am waiting on a call from the hospital that is looking after my case. Once i have my initial visit, I know that i will have lots of questions. So in the meantime, I am browsing other people's posts to get an idea of what the procedures are...thanks

Jump to this post

A good place to start with the type of transplant you’ll be having would be this discussion I started a few years ago. You can reverse the order of the conversations in the little bubble below the opening discussion paragraph. You’ll find newer posts by @katgob who very recently had her allogenic bone marrow transplant.

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another great discussion was started by @mary612 when her husband was being scheduled for a bone marrow transplant a couple of weeks ago.

Husband facing a stem cell transplant:
https://connect.mayoclinic.org/discussion/husband-facing-a-stem-cell-transplant/
We are open an honest with our replies so don’t let some of the experiences scare you off. Each of us goes through our own journey in this procedure. And each clinic/medical facility will have their own protocols. But the process is the same. I’m fond of saying it’s not a walk on the beach, but ultimately it is the 2nd chance at life for those of us who have no other option and well worth the effort. Again, let me know if there’s anything I can help you with.

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erincarrasco2024 | @erincarrasco2024 | Jul 12 10:35pm
In reply to @snakebite "As far as I know there is no cure for MF. When I was diagnosed I..." + (show)
@snakebite

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.

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it's so nice to hear something so positive. I have been feeling hopless. Thank You

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cindyem | @cindyem | Jul 13 9:06am

I was diagnosed with a myelodysplastic disorder over a year ago. Last fall a bone marrow biopsy revealed that I have primary myelofibrosis. I asked about treatments to slow it down and my oncologist said we only treat the symptoms until a transplant becomes the last option.
Like all of us, I’ve been reading reputable literature that speaks of new medications that slow down the JAK2 production of fibrous tissue.
After my last follow up I asked about these new drugs. She asked if I’d like to participate in a clinical trial at Mayo Clinic. Because I live in Minnesota, I was more than willing to drive to Mayo. I met with the world’s leading physician specializing in Myelofibrosis. Bottom line is they don’t treat early on in the disease. He said I’m too healthy to be in a clinical trial at this point. (I feel very normal except for so fatigue, hair loss, and itching.)
At 76 years of age he said that I probably won’t “die OF Myelofibrosis but WITH Myelofibrosis.
I am now free mentally to move on and live my life. I’m so glad I made the trip.

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bmarkable | @bmarkable | Aug 27 3:31pm
In reply to @snakebite "As far as I know there is no cure for MF. When I was diagnosed I..." + (show)
@snakebite

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.

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Has anyone been prescribed a pill DONOZOL to be taken twice per day for Mylofibrosis? If so, did it improve your readings, after how long, and what were the side-effects? My Hematologist just switched me from weekly PROCRIT injections because my HGB and other related readings were not reacting after two years. I am 73 years old. Thanks

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tkramer | @tkramer | Aug 28 7:44am

When I was diagnosed with Myelofibrosis back in 03/2024 my Hematologist placed me on Danazol. I took this medication twice a day for three months prior to my bone marrow transplant. I had absolutely no side affects to this medication and it assisted in keeping my Hemoglobins between the range of 8.5 - 10.0. My Transplant Dr. placed me on Jakafi prior to my Transplant. Once I was admitted to the Hospital for the Transplant process I was taken off the Danazol. I'm now 60 days removed from my stem cell transplant and doing well. To reiterate the Danazol did assist me in my Red Blood count.

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snakebite | @snakebite | Sep 6 7:50am

Snakebite here. At this point things are looking up. I had started back on Chemo (Dacogen) after a year off of it. My doctor stopped it after one session. The Vonjo was dropped and I changed to Ojjaara. Things seemed to Yo-Yo a bit for a couple of months but no Transfusions were needed. CBC bounced up and down, but generally were up. I don't know how long it will last but my CBC 4 days ago was so good that I didn't even qualify for my bi-weekly Aranesp shot. THAT, is a first! I knew something was working because I was able to do more work around the house and piddle around in the shop than I have in a very long time. I guess we will see just how long I can ride this new Pony named Ojjaara. God bless you all and Hang in There.

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janetlen | @janetlen | Sep 7 10:50am

Fantastic news Snakebite! I am so happy for you!

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