What are treatments for myelofibrosis?

Hi @davi0937, The BMT experience at Mayo-Rochester is outpatient. There are just a couple of days in Methodist Hospital during the pre-conditioning and day Zero (transplant day). After the transplant you’re expected to recover in lodging near the clinic for 100 days or so. Lots of hotels, apartments nearby as well places such as Gift of Life transplant House or Hope Lodge.

Patients return to the clinic daily for follow-ups, labs or infusions. You’ll be given a card with numbers to call if there is EVER an issue or concern. You can call the number 24/7, it’s answered immediately by the BMT team and if needed you will be admitted to the hospital quickly.
I have more information on those details when you need them.

Thank you again!

Morning - one more question! From the appointment when your provider said you were fit for BMT - how long till you went in? I’m still working and trying to sort out timing. I know it will be different for me but curious. Thank you again!

Timing on a BMT for some patients can be more critical than others. If you’re receiving one, basically preemptively, planning might be done with your schedule in mind. In my case, as is often, there was more of an urgency to get this completed before a relapse. (I had reached a temporary remission with a high risk for relapse)
Timeline in a nutshell:
February 6, diagnosed with AML. (Several rounds of chemo between diagnosis and BMT)
Mid April, first consult with BMT doctor (confirmed as candidate)
Mid May. 2nd consult with BMT doctor- matched with donor
Mid June, testing followed by transplant June 28.

For planning purposes…expect to be in Rochester at least 100 days (maybe less if let out for good behavior. LOL).

Returning home, you’ll still be tired though you should be slowly regaining strength and stamina. Usually by 3 months you’re feeling appreciably better but still not 100% energy. That may take a while. Most people are feeling pretty fit by 6 months…again, that’s not a guarantee. There are ups and downs.
I’m 6 years out, most days feel like I’m in my 20s (I’m 71) but then if I act like I’m in my 20s, I’ll have 2 or more days of feeling like a slug. 😁. So, it’s all about pacing ourselves.
My advice to you is to try and be as healthy as possible before having the transplant. Walk daily, even during the journey! Exercise, eat healthy foods, focus on positive affirmations and always have something to look forward too. This all helps to get through a few months of challenging times. It’s well worth the effort!

When PROCRIT became ineffective for me, I was switched to ARANESP. I also received REBLOZYL The ARANESP was given to me every two weeks, and the REBLOZYL was given to me every three weeks. They made a big difference in my HBG count. Since starting with the OJJAARA pill every day, my CBC's (knock on wood), have been virtually normal and I haven't needed either of them.

Hi @snakebite,

If you do not mind my asking, did you have any symptoms when you were diagnosed with myelofibrosis at age 60? I read through what you posted and see that you are around 77 now. And that is without a bone marrow transplant I believe. Great to hear! How many years after diagnosis was your spleen found to be enlarged? When did your symptoms develop?
Thanks for sharing and hope your day is going well.

Hello. I had a full routine physical when I was 60. My Doc said that my Platelets were very high and that he was referring me to an Hematologist at the local Cancer Center. My original diagnosis was ET, and they started treatment with Anagrelide. Things didn't change and after several months I was switched to hydroxyurea. Again things didn't really change all that much. After about year and a half they did a Bone Marrow biopsy. The results didn't look good so they sent me to see a Dr. Greenburg at Stanford Medical Center. He is their MDS specialist. He said I had MF... so the journey began. It's been a heck of a up and down ride. For the most part the only real symptoms I had early on were being tired. I have always been the athletic type so it was tough not having the stamina that I was use to having. They tried all the usual things. Some help for a while, but all of them met with a limited amount of success. I resisted Blood transfusions for a number of years... but it finally reached the point that I had no choice. I must admit, it made me feel so good that I looked forward to them. When we started the Chemo, things got Dark for me. It was not a fun occasion at all, but I persevered. A scan showed that my spleen was Gigantic. It had been giving me problems for well over a year when we found out. Unable to eat much at a sitting, and pain when I took a deep breath. They were on the verge of doing Radiation on it to make it shrink when Vonjo show up... I tred it, and it very rapidly shrank my spleen and helped my CBCs. Blood transfusions where only an occasional event while on Vonjo. After a couple years the Vonjo's effectiveness dropped and things were again looking bad. Then up jumps Ojjaara. Now I'm riding that cart and so far it is a great ride. It does give me loose bowels, but I don't give a **** , I'm living the good life for now and hope it continues for a long time.

Hi again @snakebite ,

Thank you for responding and sharing your situation so fast! Like you, I went for a routine physical and getting my enlarged right ring finger problem determined, but I was older than you at 65. Lab work showed I had very high platelets and I was sent to Rheumatology and O/H. Rheumatologist told me she did not know what I have. O/H told me for sure I had ET. I had and still have no symptoms, just my painless deformed right finger joint and swollen area right below it and high platelets. More labs were run on me and no Rheumatoid factor found and no JAK2 found. I was not too bright and asked for bone marrow biopsy as my insurance kept refusing to run ultra guided biopsy of my right ring finger that Rheumatologist ordered twice! My BMB showed 1-2 of 3 fibrosis so my O/H said pathologist said it looked more like primary myelofibrosis and my diagnosis got changed. Just that one day of my BMB my platelets had dropped to still high, 844, but just that day my red cells were low by a few tenths. Taking nothing and doing nothing differently, my monthly labs showed red cells back to completely normal levels and platelets elevated higher to about what they were when I did that routine physical. I take just baby aspirin daily as if I truly have myelofibrosis I do not want to have my red cells lowered and that comes with Hydrea also but I do not want to have thick blood more prone to clotting. Next, my O/H sent me for a pelvic CT scan and my spleen came back completely normal size and no blood clots found anywhere. My insurance has no MPN specialists I was told by my O/H, so she referred me to bone marrow transplant specialist and said bone marrow transplant must be done by age 70. I am 65 and will turn 66 fairly soon. So. I will go hear what BMT specialist has to say in early August. My O/H also had NGS testing done me as well as two types of the newer risk analyses for myelofibrosis which came back very low and low. I believe it predicted 26 years life expectancy on one and the other is so new it has not be determined for that one. I am frustrated but realize I should be very grateful that I have no symptoms and all my usual energy. Like you, I would be very sad not to be able to do all the physical activities and have my energy each day. So it sounds like I may have about one more year of absolutely no symptoms since this all started for me in December 2024. Thank you for sharing and have a blessed day!

Hello Connection Community - for those that have Myelofibrosis - my particular type is primarily anemia- do you have a racing or what feels like a stronger heart beat? Also- do you feel your spleen now? I’m not on any meds so curious what is a symptom or not.

Thank you

I was diagnosed with secondary ET myelofibrosis a few years ago after living with ET for around 17 years. I had an allo-SCT last October and I am doing well. During my pre-SCT with MF, my main problem was anemia due to low hemoglobin levels, which required many blood transfusions to keep the counts above 7.0. I do not recall any racing or stronger heartbeats.

You asked an earlier question about timing for the SCT. For me, here is how that went. After clinical trial to no avail, I finally was prescribed momelotinib, which successfully raised my hemoglobin levels above 7.0 greatly reducing my need for transfusions. My doctors monitored my MF grade with BMBs and once I reached grade MF-3, I was told it was time to begin the SCT or I risked converting to AML. I was 69 at the time. My transplant clinic had already begun the unrelated donor search and had identified best candidates. So, that saved some time. By the time I made the “go” decision, I had the transplant about 3 months later.
So, that is how timing the transplant worked for me.