Myelofibrosis*

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.

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.

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?

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.

I have smoldering mutiple myeloma which could develop further. We have great doctors here but it is a major problem when figuerng our where to move.

The rural areas are poorly served. Have to been to a large city to request treatment that could be handled remotely?

Myelofibrosis (Diagnosed by Mayo 7 years ago) is one of those conditions which many doctors know of but few doctors are willing to treat. It can take a lot of time and care over a few decades. Finding a doctor to diagnose and treat is a pain in the behind in rural areas. oldkarl

@teriberi123, her Dr. did not approve it with Jakafi or with pacritinib.

I was diagnosed by Mayo with myelofibrosis several years ago. Since then, various clinics have repeatedly said I have myelofibrosis, along with a bunch of other familial stuff. I am still in the process of sorting it out, as the whole thing is systemic, plus other crap such as multiple types of muscular dystrophies, cancers, etc. With any luck I should be able to get a whole genome analysis some time this year. The whole thing depends on finding docs and labs to be brave enough to sign the order. I think I may have found one, so we will wait and see what happens next. The current USA system seems to be working on the basis of "If we can just wait long enough, this guy will be dead before we have to tell him anything, but we can still collect the money." oldkarl

I was diagnosed with PV three years ago. Started Jakafi 8 months ago.

Hi @pamdg, You’re wondering if Jakafi can cause irregular heartbeat.
I’m looking at the Drugs.com website for the side effects of Jakafi. There is no listing for irregular heartbeat. But it can cause fast or slow heartbeat as a “more common” side effect.
In the “less common” column of side effects are anxiety and gas. Anxiety/stress has been known to cause irregular heartbeats. But if this is frequent you should discuss this with your medical team.
I know gas sounds like an odd thing to bring up, but I had a medication that created gas which actually felt like my heart skipping a beat as it moved through an area of my gut. My chemo nurse with a stethoscope had me listen. 😆 Anyway, that’s just a thought.
I’ve not taken Jakafi personally so hopefully someone in this group who is using it will have some information for you.
Were you recently diagnosed with myelofibrosis? Is Jakafi a new prescription for you?