Bone marrow biopsy results.

[cabinetmaker]

It’s taken a while but I finally have a conclusive result from a bone marrow biopsy and it shows that I am pre-fibrotic MF. I was able to talk to my specialist yesterday about the findings and they aren’t as bad as I feared. He explained to me that although I do have some of the characteristics of MF, my prognosis and treatment remain much more like my original diagnosis of iron deficient PV. Apparently I’m a sort hybrid.

Does anybody here have experience of pre-MF?

Wishing everybody good health and strength as we head into a difficult winter.

Joe

[Cja1956]

I’m glad you finally got your results. Before my BMB with my new hematologist last year, she said I may have pre-fibrotic mf, based on my records. After my BMB, I was diagnosed with post et mf, intermediate 1. Looks like you are in the very early stages of mf, but with all the research and new treatments coming down the road, hopefully you’ll be okay.

Good luck and best wishes.

Cindy

[cabinetmaker in reply to Cja1956]

Thanks for your reply Cindy, it’s very much appreciated and I wish you all the very best as well.

Joe

[IrishHiker]

Great to hear!

Reading my response 20 hours later... and hoping it was not misinterpreted. Just meant to relay to you that the “pre-“ part of hour diagnosis sounded much more positive than say if it had been “advanced” MF and I was excited for you! I read these posts first thing when I wake up and perhaps need to be awake MORE before responding. Sorry if it was misconstrued♥️

[cabinetmaker in reply to IrishHiker]

Nothing to worry about at all, I understood your meaning and it’s exactly how I felt when I heard the full diagnosis. There was a period of a few days, when I thought a diagnosis of overt MF was likely, obviously I was very relieved to hear that I haven’t reached that point yet.

Thanks for your message and consideration, it’s appreciated. All the best wishes to you.

Joe

[ourlife]

Hi cabinetmaker,

I am under the impression that when fibbers from the bone marrow are present in the blood a BMB will show grading from 1 to 3, and a diagnosis of MF is given at grade 2, I was told a few years ago I am grade 1 following a BMB and can stay that way for a long time, it was not explained as pre MF as I may never progress to level 2.

I try not to think about what may never happen and try to live my best life now.

Good luck and have fun,

Ourlife

[cabinetmaker in reply to ourlife]

Thanks for your reply Ourlife and have fun is good advice.

Best of luck to you too.

[redumbrella]

Hi Cabinetmaker,

I also was diagnosed with grade 1 MF following a BMB a year ago, I was told not to worry at this stage as it could take years to progress. I was put on Hydroxy and continue on Asprin. On the plus I have only had 1 venesection since I started Hydroxy.

Best of luck and stay safe.

Garry

[cabinetmaker in reply to redumbrella]

Thanks for your reply Garry, it’s good to be in contact with people in the same boat and to have the reassurance of being told similar prognosis.

Wishing you all the best.

Joe

[littleluigi]

Hello, just found your post. I am also Pre-mf. I am jak2 positive and you?

[cabinetmaker in reply to littleluigi]

Hi littleluigi, I’m also JAK2 positive, with no other gene mutations, but a catalogue of symptoms and side effects. Still doing ok though.

How are you?

[littleluigi in reply to cabinetmaker]

Hey, i am good actually for the moment i don't jave symptoms.. have to start with pegasys next month