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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.
Replies to "Hello; I've been fighting MF for a very long time, about 15 yrs. I'm 75 yrs..."
My mom had myelofibrosis and lived with it for over 30 years. So it can be done! Hang in there
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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?