myelofibrosis

[glyndale]

Thank you everyone for your replies, advice,and links to further information, I am most concerned about the prognosis which differs depending what site you are on ,very confusing.

[Leighcox85]

many websites have outdated information I was told I had 2 years I have lived for 13 nearly 14 years with mf we have 2 forms of treatment now rux and fed which we didn’t before iam classed as intermediate 2 personally I take each day as it comes your newly diagnosed and that’s a scary place I remember reading the internet myself and freaking out but we are all different all you can do is put yourself in the best position possible by seeking a mpn specialist and always advocate for you it’s the advise I wish someone told me at the beginning there’s a lot going on with research and new drugs please try not worry I know it’s hard x

[glyndale in reply to Leighcox85]

Thank you yes I am worried about the prognosis, google is maybe not the best place to search. Best wishes.

[Otterfield]

Rather than look at Google, you will learn much more by talking to your haematologist about prognosis and ask for a referral to an MPN specialist as soon as possible. There are many variables and what's true for one may not apply to others. People can live for a long time with MF.

[glyndale in reply to Otterfield]

yes thank you ,I have quite a few questions that I need to ask ,google is not the answer.best wishes G

[Meatloaf9]

Your best source for the information you are looking for is probably a well qualified mpn specialist who is familiar with your history. I have PV (for now), high risk, and just this week questioned my mpn specialist about progression to MF, and he assured me that "MF is not a death sentence". Most mpn research seems to be directed to MF and a lot of new treatments are on the horizon. Best to you.

[glyndale in reply to Meatloaf9]

Thank you

[MFBMT2011]

I am in the UK. My first prognosis from a local haematologist was 8 months while google gave me 12. Seeing an MPN specialist increased it to 2-8 years with a median of 5. I was intermediate risk two. That was about 12 years ago, but I went down the stem cell transplant route, which has its restrictions and is not suitable for all. You need to see an MPN specialist for the best advice , if necessary by seeking a second opinion .

Coindentalljy an email arrived this morning from patient power regarding reaching your mf treatment goals. The link below should help

Chris

patientpower.info/myeloprol...

[glyndale in reply to MFBMT2011]

ok thank you.

[TLJ-1]

I received my diagnosis of primary MF in May and, like you, found it to be a real downer. However, the prognosis depends enormously upon which driver mutation you have and whether or not you have other mutations that are by now known to have an effect. I expect you have been or will be tested for those mutations. Of course, there is a large variation in individual response to the disease. There are a couple approved treatments, which are likely to help you "stabilize" for a while".  But there is also some research occurring, some of which is in drug development, that means alternative treatments should become available if you can simply hang on for a few years. 

Here are a couple websites that provide very useful information for you to understand what is happening (I prefer the first one to start). In addition, there are websites that consider ET and PV in addition to MF, but you will want mostly to emphasize your own disease.

rarediseases.org/rare-disea...

mpnresearchfoundation.org

mftakeshold.com/mfprogression

clinicaltrials.ucbraid.org/....

Best wishes for finding your way to stabilizing your life with this disease.

[glyndale in reply to TLJ-1]

oh thank you for the info ,much appreciated.