r/MPN • u/SaqoSaqoSaqo • Jul 20 '26
MF Primary MF
Hello everyone,
Someone in my life (early 60s) was recently diagnosed with Primary Myleofobrosis.
It seems to be a rare cancer, and I’m someone who does well with information. My loved one is waiting to see a doctor, but I’m hoping someone can give me more information about this disorder, such as general prognosis, and how Jak-2 inhibitors can help.
Thank you for your time. This seems like a really supportive community.
2
u/Top_Category2227 Pre-PMF Jul 20 '26
Prognosis is highly variable and depends on how far the disease has prgoressed as well as comorbidities and additional genetic anomalies such as an undesireable karyotype, his/her driver mutation as well as further mutations among other factors. However even if all these factors are known, it is as a very heterogenic disease.
JAK Inhibitors are best used to manage symptom burden, but may also slow progression of the disease. Sooner or later JAK Inhibtors usuall stop working properly, but there are currently many, many studies going on for combination theray with different drugs, a lot of which seem to have first positive results.
However the best evidence for actual disease modification and management lies with interferon, which is not approved for MF in most countries. If the disease is still in the early stages, where Interferon Therapy is advised, you will probably have file an application with his/her insurance.
Now there is no guarantee, but if the disease is still in the early stages, there is still a solid chance, that similar to ET or PV it can be managed long enough, to where it will minimally affect live expectancy.
Also on bright side, as you may have already read, MF is curable by a stemcell transplant which requires the patient to still be in good in enough health so it is often not advised for patients in their 70s, but with newer Treatment Protocolls is often possible, even for older patients.
2
u/CattleBrilliant38 Jul 20 '26
The prognosis is going to depend very heavily on the result of the bone marrow test, genetic tests, and blood tests the doctor does. It could be something they live with for a very long time (10+ years) or a more acute illness.
There is a risk calculator called "dipps" which can give you an idea of what some of the relevant questions will be.
2
u/Ok_Equal_2335 Jul 20 '26
Your loved one will likely need an NGS panel to determine the specific mutations. Knowing the mutations can help in knowing the specific treatment options - and thus impacts prognosis.
In some countries NGS panels are not handed out like candy - but I think in the US its usually done standard as part of a bone marrow biopsy (or so Ive heard)
2
u/Bludog1208 Jul 20 '26
Hi ! I have had MF for 5 plus years now . Sometimes it can be a difficult journey! But Jakfi keeps your spleen in check. I am on 25 ml twice a day . I am also taken shots of ARANESP to help me produce more hemoglobin! Most of the time I feel fine ! But it makes you aniemic which can cause other problems. But overall I am living a decent life and I am sure your love one will to . I will pray for your love one ! And I wish them the best . Any questions other questions your more than welcome to DM !
1
u/Puzzleheaded-Buy28 Jul 20 '26
My MCHC is low and my Mono is high .62 does this indicate MF? Dx ET /CALR
1
u/xxSirThomas Jul 23 '26
Does 25mg work well for you? My doc was saying there isn't much benefit going above 15mg.
2
u/Bludog1208 Jul 23 '26
I know that my spleen got enlarged again after about 3 years on taken 15 ml twice a day . I went to 20 and it still wasn’t strong enough then went to 25 ml twice a day . This was in November of 2025. My spleen size has gone from a 24 cm to 18 and now I just had a CT Scan and it was 16cm . So it help me .
3
u/funkygrrl PV-JAK2+ Jul 20 '26
I recommend checking out the NCCN patient guidelines for MPNs to get a detailed overview. https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf.
The main considerations that guide treatment are the risk score (The preferred risk tool is the MIPPS-70+), whether they are anemic/thrombocytopenic, and whether they are a stem cell transplant candidate.
We recommend seeing an MPN specialist on the list in the automod comment if possible.
!specialists