Myelofibrosis*

Hello; I've been fighting MF for a very long time, about 15 yrs. I'm 75 yrs old. I've had just about every treatment available. Some seemed to help for a while, but didn't last for the long term. I take Reblozyl injections every 3 weeks, Aranesp injections every 2 weeks, Dacogen infusions every 4 weeks. Vonjo oral twice every day. Blood transfusions are needed every 2-4 weeks to keep HGB above 8. I've been anxiously awaiting the release of momelotinib. I ask the FDA about it today, 7/10/23, and they said a decision on it will be made by Sept 16, 2023. No doubt that I have been slowly loosing ground over the entire time and my ability to continue my active life style as usual has been greatly decreased. I do continue to take a long walk daily, but I take care not to push myself too hard. Without the available Oxygen it's easy to overdo things. The one thing I suggest is to not just sit on your butt and cry.... get up every morning, clean yourself up, look your best and find something every day to be greatful for.

Welcome to Connect, @snakebite It’s so important for us to keep a positive countenance especially when facing a long term condition. You’ve certainly got a great attitude of not just sitting around and crying, but making sure to get up every morning, to take care of yourself, to look your best and to find something to be grateful for daily! Those are powerful words and actions to keep you motivated. Thank you for sharing this reminder to those who might be wavering.

You’ve faced quite a journey with myelofibrosis with so many different treatments over the last 15 years. Was a stem cell treatment ever discussed as an option for you?
You must feel like a slug by the time your hemoglobin gets below 8. I’ve had that happen and the energy level just plummets!

I surely hope this newest medication, momelotinib continues on its fast-track approval for you and other MF patients. You piqued my interest so I did a little reading about it. Looks promising and holds hope for so many suffering the effects of myelofibrosis when other treatments have failed.

Thank you for sharing your experience and gracious attitude. You never know how many people you may be giving that all important nudge to. ☺️

What were you grateful for today?

I have MF diagnosed 12 months ago,
Goctoor said I only had 5 years to live.
Is that correct?
Your post said 15 years! Wow, what an effort.
Do I take the 5 years prognosis seriously?
I feel fine.

When I was first diagnosed, Dr. Greenburg at Stanford MC. told me that five years was the average survival. The single biggest factor here is that treatment for MF has made huge advancements in the past few years, and there are some REALLY promising things coming just around the corner. Nobody other than God knows how long any of us have in this world. So, I just take it one day at a time, and consider each day a victory. Everyone is going die, and there isn't any doctor that knows when that will happen. In the mean time do your best to take care of yourself.

My mom had myelofibrosis and lived with it for over 30 years. So it can be done! Hang in there

Wow, I am glad I kept checking till I saw all these reports on mylefibrosis. I was just diagnosed last year after a dry bone marrow biopsy and since then I bhave been having weekly injections of Ptocrit but my readings go up and down from 8.8 to 9.2. I am still active at my age and just got a second opinion from another hematologist about having a stem cell implant even though in my 70s. Glad to learn that you can live for so long with it, and about the new drug coming out, which I have to investigate.
Will follow this thread of shared information. Thanks. We live by faith.

I used to use Procrit to stimulate blood production. After a time it stopped giving me the needed results so we moved to Aranesp. I also get Reblozyl injections. About a year ago they added Dacogen infusions. For the past coupe of years I have needed Blood transfusions pretty often so as to keep my HGB above 8. The Dacogen treatments have reached the point that the side effects outway the benefits, so I just stopped the Dacogen. The good news is that the Dacogen did help my marrow to start producing at least some more good blood cells, and has cut down on the frequency of required Blood Transfussions. The new drug, Momelotinib, is supposed to give the same Cancer fighting effect without all the negative side effects of killing good cells too. I don't think it is a "Cure", but it could be the closest thing yet if it performs like hoped, and like some of the Trial results showed. Being free from the need to get Blood transfussion is a big deal at this point in my journey with MF. The new drug should be approved by Sept 16 this year. Let's all keep our fingers crossed. In the mean time... stay on the Sunny Side.

My mom lived with it for almost 30 years so I am not sure why your doc says only five year. I might look or a second opinion.

Looking and reading these posts seems to me that there are many unknowns about MF.

This site is great to get different experiences and views,

I am a practical man and it seems to me that there is too much guesswork,

Thanks for mentioning Procrit. That's where I am at, and my HGB is not moving. We are talking about changing, but to what. I am not entertaining the stem cell solution. The information about the new drug is appreciated.
Since you have been through this for so long, what are your side effects. Do you have to be treated for anything else? Before the bone marrow problem I had Sjogren's so stopped methotrexate when I realized that it was the bone marrow culprit. Believing for miracles, however.