Myelofibrosis: What factors lead to treatment?

Good morning

Since my post August 28 I’ve done more investigating SCT - outcomes, risks, and post transplant life. I’m 66, diagnosed 6/2025, MPL with high risk SRSF2 (moves to AML) on a clinical trial at Mayo Rochester that solves my anemia. The facts are even with maintenance drugs the cytokines storm in our marrow and body continues- we are fatigued because of it and the drugs and impact on our organs (liver, kidneys, lungs) ages us and makes us less physically able to optimize the SCT. I’ve now researched the ORCA-T studies. They focused on young patients that had myeloablative conditioning. They did not include myelofibrosis patients in the phase 3. The new study is called SERENE-T and includes older patients with reduced conditioning and MPN. ORCA processes have had positive survival, GVHD outcomes over the current SCT protocol. I am considering enrolling but will discuss with the Transplant MD at Mayo next week. I will keep you all updated. The alternative I’m considering is at the University of Minnesota where there is a conditioning between reduced and ablative that had very good results as well and keeps the patient in the hospital for 30 days. Mayo discharges patients after the donor cells are implanted and there is possibly a 40% chance of readmission into the hospital along with infection issues due to transport back to clinic daily. I’m considering a January SCT which would mean for possibly 1 - 2 years of physical impact if I survive but I could be on the road to recovery by the time I’m 70. I’m still trying to understand what the time after transplant looks like - 6 months, a year, year2. Best to all my fellow Myelofibrosis patients. Betsy

Hi @samlupowitz ,
I had never heard of that disease before you posted about it. I had to look it up. I am so glad you do not have myelofibrosis and that you are doing so much better on the right treatment for what you actually have.
Stay positive!

@davi0937 Hi Betsy. Dang, we missed each other by a week. I just had my 7 year follow-up in Rochster. Would have been fun to connect with you!

You’ll learn quite a bit at your next appointment with the transplant doctor. Have a list of questions ready regarding your research as to the different approaches at Mayo and the U.
If I may give my input, don’t be put off by the quick discharge right after the transplant. Mayo does BMTs as an outpatient procedure. Patients tend to recover faster in a non-hospital setting…you get more exercise, eat healthier, sleep better, less exposure to hospital germs. It also frees up the hospital space.
You do return to the clinic, usually 94, daily for the first month-ish for labs and any infusions needed. Honestly I loved it! I felt I was more in control of my environment and I wasn’t languishing away in a hospital room for 30 days. No infections or disadvantages.

I did return to the hospital for an issue. That was easy peasy. At time of transplant, you’re given a card with numbers to call 24/7! The call is answered immediatly by a transplant team member. My husband was told to bring me right over and I was admitted without hesitation. Station 94 is ready for any contingency. This isn’t their first rodeo.
Another advantage of Mayo is the deep bench of specialist. If there are any issues, as an example with liver, heart, etc. a specialist is immediately brought onto the team an sees you right away.

When you go in for the transplant, the first few days (after you have all the pre-testing) you’re given the preconditioning chemo. Depending on the underlying condition it’s 3-5 days of chemo. Usually by day 4 you’re admitted to Methodist Hospital, 9th floor. (Affectionately referred to as Station 94). There you finish out the chemo, followed by a day of rest and then Day 0 which is transplant day. Very anticlimactic as it only takes about 20 minutes.

The first 3 months (100-ish) days are critical. The first month and a half are probably the roughest with slow recovery. After that, you’ll see gains in strength and stamina. By 3 months I was walking a couple miles daily again. By 6 months I was feeling 80% back to normal? I had my transplant the end of June and by February the next year I was back walking the beaches of Florida for a month…if that helps put it into perspective.

I was 65 at the time of transplant. Now I’m 72 and was running up the long flight of stairs in the Gonda building yesterday! You know the one…by the piano! I’d say I’m back to 100%. If I wasn’t on Connect daily mentoring in the BMT and blood cancer support groups I doubt this would on my radar much anymore.
I just spoke with my friend a couple days ago who had MF. She and I met while having our BMTs at the same time. She’s a little older than I am but equally doing well.

This is an opportunity for a 2nd chance at life. But a big decision of course. You’d be in excellent care in either place. I think you’re closer to the U of M so you wouldn’t have to relocate for 3-4 months. Whatever you decide you have a load of us here for moral support! ☺️