Jakofi or BMT for Myelofibrosis

I had bmt and taken Jakafi, but not for myelofibrosis. I was diagnosed with acute myeloid leukemia and had a bmt for that. Five years after the transplant I was put on Jakafi for graft v host disease. When I compare the two, Jakafi was very easy to manage compared to the bmt. I’m still on Jakafi, 5 years later, but on very low dose as my doctor is weaning me off that med. Initially, Jakafi decreased my hemoglobin, and it dipped below normal. I had regular blood work done to monitor my hemoglobin. Eventually, my hemoglobin recovered and I have stayed in the normal range ever since. For some people, taking Jakafi causes a very drastic dip in hemoglobin and they have to switch to a different med.

I would describe bmt as being hit by a freight train. It’s extremely rough on the body and recovery is very long and slow. For me, that was my only option to survive, so I am glad I did it.

I can see how you prefer getting the transplant while you are still young enough and eligible to get it. If your doctors recommend trying Jakafi first, I would do it. You will know pretty quickly if you tolerate it well.

These decisions are hard to make - each takes you in a different direction. Check with your doctor if you can try Jakafi first and then do bmt later, if needed.

@alive thank you so much! Very good plus/minus evaluation. I’m glad you survived the BMT and are getting weaned off of the meds.

Hi @davi0937 You’ve had a really great response to the trial treatment you’re taking for MF. That’s fantastic. So it’s understandable that you’re reluctant to add Jakafi to the mix. However, that drug does have a good track record for helping to reduce enlarged spleens with myelofibrosis patients. So it might just be the missing piece for complete treatment for you.

It’s a big step between meds and having the BMT. I’m with @alive on this one. If your MF can be controlled with meds, it’s a lot easier than rushing into a BMT. At 66 you’re still young enough to give the meds a try and potentially go ahead with a BMT later if needed. What has your doctor discussed about the bone marrow transplant?
How long will you be on the trial drug? And can you remain on this drug that’s been so effective?

@loribmt Thank you for the follow up. The clinical trial physician is very happy with the drug impact on my hemoglobin. She has discussed adding a chemo drug to address spleen enlargement. It’s not to that point yet. The trial drug has not shown decreased efficacy with any of the participants. When I looked at the side effects of Jakofi: high cholesterol, weight gain, secondary cancers(skin), fatigue- it seems like a toss up. When I was first diagnosed last June - the hematologist at HP discussed BMT. I drew a graph of the two paths: vertical was pain and horizontal was time. One graph had a slow increase of pain over time and one had the sharp increase the slow decrease. I know that is simplifying the two options. The BMT could fall, a 20% chance of mortality and the long road to a reasonable life.

I meet with the Mayo BMT provider in July. I have an ongoing list of questions for him. I’d like to know success/failure related to age, comorbidites (high cholesterol) and health status overall. I am interested in hearing from others how they have reacted to Jakafi. If the side effects are relatively easy- dose related etc. I’d also like perspective on post BMT - time to feeling 50%, 70%? Impact of immune system on normal activity. Today I cleaned windows inside/out, planted flowers, picked weeds, cut grass, brought compost to the city lot etc. After a BMT would any of that be possible 3 - 5 years out? Thank you!

@davi0937 Post BMT recovery varies per person. I think I can reasonably say, for most of us, we regain a slow but steady increase in energy and stamina over the first year.
I had received my BMT at 65 after several months of high intensity chemo for Acute myeloid leukemia. So by the time I had the transplant I was certainly not at my normal level of anything! LOL. Post BMT, I was feeling pretty peppy by 3 months compared to the 3 months prior. Looking back on my journal, at 3 months, I was walking several miles daily but required naps. By 8 months we were back down in Florida for the winter and I was walking the beach for several miles. I have notes at 6 months of actually enjoying doing a few mundane chores around the house again. Though to be frank, I had a bit of a setback with Graft vs host disease causing a stir at my 6 month point. But treatment got me up and running and recovered enough to make the trip to Florida.
By 2 years and beyond I’ve been back to about 97% of a normal life. Very energetic, athletic, fully capable of most everything I did before. Just happy to be alive! I have to keep in mind that I’m now also 72. Sometimes I find myself doing tasks a little slower than 4 years ago, but still tackle some big projects.

We’re gaining so many wonderful new members in the BMT support group, along with our regulars, whom I’m sure will share their stories as well. One friend in particular just blows me away. @g4c had his BMT for AML in April 2024. Just this last summer, a little over two years post, Greg accomplished his bucket list of trekking a 14,000+ elevation mountain trail in Colorado. He’s an avid hiker and has another upcoming epic trek at the end of this month! He has surpassed his own personal challenges in exercise goals and accomplishments. So he is a major inspiration for me to make sure I don’t start slacking! LOL

I will caution you that there will some normal activities that you would be discouraged from doing for at least 2 years. Gardening, raking, composting are big no nos. You will have a new immune system that should mature over 2 years time to that of an adult. However, it will never be as robust as your original, factory installed model! You may remain more susceptible to infections and illness. Garden soil, leaves and such harbor various mold and fungi which can cause lung infections that may be difficult to fight. I was told to not even pluck a weed for those first 2 years.
I still don’t dig or rake, but wearing a mask I will use the weed eater to trim grass around garden boxes, dead head flowers, pull a few weeds, etc. but leaf blowing, raking, hoeing, or mowing are no longer on my todo list. This would be something you need to check with your own team. But since you’re also being seen at Mayo, this was my guideline from my team there.

Lots to consider! Your doctor and team at Mayo will be a great source of information. Don’t hesitate to have your list of questions ready! They want you to be well informed! Me too! I’m here anytime for you!

@loribmt Thank you! Really appreciate your helpful information.

I am on Jakafi for GVHD 18 months after a SCT. I have mild liver enzyme elevation. I have had no adverse reactions although it will bring your blood counts down. I have upcoming labs on May 26.