MF progression??

[Karol_Rua]

Hello everyone, I was diagnosed with ET 21 years ago and am JAK2+. I've been fine in general (a few thrombotic episodes over the years), have ridiculous fatigue but no itching or bone pain. I have no idea what my JAK2 allele burden is...

My question is - Has anybody on this forum any experience with ET that has progressed to myelofibrosis (MF)? I saw my haematologist on Thursday and she commented on my weight loss, paleness and I definitely have more fatigue than a number of years ago. Is there a likelihood that as I have lived with ET for so long, there is a greater possibility / probability for it to progress...?

I have been referred for BMB to check for fibrosis but I'm just curios today...going off to read some research papers!

[Otterfield]

I progressed to MF after 19 years with ET. I don't know about probability but sadly it's a fact that some do and some don't.

Don't despair - there could be other causes of weight loss and paleness but it's best to be checked as soon as possible.

I believe the best information can be found on the MPN Voice website. Research papers are written by and for medical professionals and it's all too easy to frighten ourselves.

Good luck, Jennie

[Cja1956]

I was diagnosed with Et Jak two positive in 2008. In 2019 my new doctor told me I was post ETMF but not sure when I actually progressed, since I was already at intermediate one when she diagnosed me. In 2017, I was feeling more tired than usual with terrible brain fog and fatigue. My doctor at the time didn’t think I had progressed but after doing some research and finding this site, I changed to a specialist, had a BMB, extensive bloodwork, and she confirmed my suspicions.

Let us know how everything turns out.

[Karol_Rua in reply to Cja1956]

I will do, thanks so much

[EPguy]

Has your allele burden ever been checked but you never got the results? It's worth having and tracking over time.

I see you had BMB long ago. Did you get any results? Did Dr comment on your latest blood results?

There are no increased odds of progression right now just because you've had ET so long. For all of us, more years with MPN does add to more odds of progression, since the experts describe it as "odds per year". But these odds are on average quite low, and the time with the MPN by itself does not mean this year is more likely to progress than last year was.

[Karol_Rua in reply to EPguy]

I have never discussed my allele burden with my haematologist but my latest bloods are not showing anything too telling...they're stable.

That's an interesting hypothesis on odds per year as I was beginning to wonder if it was years with MPN. (good news on my birthday!!)

I have more severe fatigue, night sweats and brain fog that are new symptoms... I guess the BMB will tell a lot. Thanks so much for insightful reply

[EPguy in reply to Karol_Rua]

If you can, it's worth asking your Haem for the allele results. Good that your bloods are stable. Let us know your BMB results and Dr's opinion and if you can get your prior ones.

[Scaredy_cat]

I probably had ET for about 24 years but it progressed to MF about 2 years ago

[CLONDARA]

Dear Karol, I think you are in your mid to late 40s? So not prying but have to say that menopuase symptoms are incredibly similar to ET so worth having that blood rest done also. Val

[Karol_Rua in reply to CLONDARA]

Yes!! Thank you and that has been in my mind too! Night sweats and brain fog 🤪 I was 48 on Monday! Thanks for that - in fairness my haematologist and I have been discussing dermal HRT which is great news as I thought I'd have to go the menopause journey alone!!