Has anyone been diagnosed or know how quickly prefibrotic Primary Myelofibrosis will develop to Myelofibrosis.
I am new here and been diagnosed couple days ago....I am trying not to panic but ending up crying all the time. Need to find some positivity in my life soon.
Sorry for very negative post
so sorry, can't help.
Hi Elab.
I’m sorry to hear of your diagnosis although you’ve come to the right place for support. Lots of lovely people here who understand what you’re going through.
I’m officially ET but it’s just a label and to be honest docs are divided as to whether I have ET or pre-MF (I have slightly raised HCT and a very big spleen). Obviously pre-MF sounds scary although the prognosis seems to vary massively between patients. For some it can be quite aggressive and for others it can take decades to transform. It will all depend on your personal circumstances and even doctors struggle to predict speed of progression. It makes it a very challenging condition to deal with psychologically so don’t be hard on yourself for crying and stressing. I was diagnosed in January and still find some days tough.
How is your overall health and blood counts? I would push for something called next gen sequencing - it can tell you which genetic mutations you have and that is currently the best known predictor of disease progression. I’d also make sure your haematologist is a specialist in MPNs - will make a difference to the treatment you get. I got a second opinion which seems to have been a very good idea - if you have any doubts about your diagnosis and treatment you have every right to do the same.
There are new drugs being developed all the time and hopefully they will be here in time for us to keep the disease in check. If not there is the option of a stem cell transplant further down the line - not a nice experience but a cure if we need it and the odds are improving for successful outcomes.
I totally understand how this diagnosis will shock you and change your life. But there is a lot of hope out there - the latest science is ahead of anything you might read online too so don’t worry too much about the scare stories out there.
Sending good vibes for everything and stay in touch x
This is interesting article claiming pre MF should have separate classification grouping. Survival rates similar to PV so good.
bloodjournal.org/content/12...
Also scroll down the latest posts on Home page, I posted yesterday a link to an uplifting MF video in which the expert says that treating MF now split into say 7 year segments. Strategy is to keep patients alive until next new drug buys them another 7 years. And so on. Was confident this was achievable.
If you are only pre MF, you should have plenty of time to wait for next generation drugs....
I think the general feeling amongst the experts is that whilst there is no cure for PV/MF at the moment, they are making good progress with new drugs in the pipeline that could dramatically slow progression.
Is your Hem suggesting a treatment plan? Drugs, genetic testing? I assume you have had a BMB?
Best wishes
Do you have the actual link to the article in the blood journal? I can't find it. Thanks!
Hope this works
bloodjournal.org/content/12...
Best Paul
Thank you very much.
Thanks so much Paul, this backs up my decision to ask for a BMB when I go to the haematologist on Friday, I was diagnosed with 'probable ET' over six months ago with JAK2+ but no BMB, and haven't had an appointment for 6 months, just monthly blood tests. I'd like to see the full picture if possible, I want to be informed and able to fight my case if necessary, especially given that I have almost definitely had this for at least 5 years already but wasn't referred by my GP until October last year. I live in NZ so not sure if they have the capability of distinguishing between ET and Pre-PMF in our labs??
Cheers,
Wendy
Hi Elab---I thought I'd reply --I have the same classification although I am older than you and I'm originally from the UK I now live in Canada.
I just came back from seeing a MPN specialist in Toronto, as I was worried about where I was and felt I wasn't getting a grip on prognosis, etc. My diagnosis seems to be prefibrotic also, but nothing is happening I'm not in transition. I don't have any of the other pointers like enlarged spleen, night sweats (drenching sweats) change in appetite etc. Changes would probably show on the lab report too - changes in the hemoglobin, white cell count, and presence of blasts.
However, like others have said the presence or absence of mutations can provide some indicator if it does progress how it might progress. I had been refused extra mutation testing where I live (the reason given was it would not impact treatment) however, in Toronto the mutation testing has been done and I'm waiting the results. ( I knew initially that I was JAK- when I was diagnosed but no other mutations were tested. )
I do sincerely sympathize re the worry, there is not a day goes by that it is either my first thought when I wake or at some point during the day. I make myself go and exercise about 4-5 times a week and I babysit my grandchildren 5 days a week, both of which helps me forget. I was not popular when I asked for a referral the doctor I went to in Toronto is an MPN specialist. It was the best thing I did for myself. It helped me look at where i am in a different way, and its made me realize I need to politely ask for clarification and politely question what I am being told when I go for my appointments. Jean/winnipeg
No doctor worth a hill of beans would be offended if you asked for a referral to a specialist for your condition, especially when it is a serious disease. The first thing my hematologist did after telling me my diagnosis (probably ET) was to suggest a referral to a mpn specialist and his office made all of the arrangements. Remember, no one cares as much about you as you do, with the possible exception of your family. Always be your own best advocate and never be afraid to ask any questions you you might have. Best of luck.
Cry all you want, eventually you will start to feel better I did when first diagnosed, although I only have ET so can’t help.
Wishing you well
HI Elab, don't apologize for feeling down and upset, we all know how you are feeling, we are here to help and support you as much as we can, you are not alone on this journey. I can see you have had some very good advice already, so I will only add that I think it might help you to read as much as you can on our website, mpnvoice.org.uk, the information on there has all be written by leading haematologists and specialist nurses. If you would like some printed information booklets please email me at maz.cd@mpnvoice.org.uk, and if you would like to have a buddy to talk to let me know, a buddy is someone who has the same diagnosis as you so can give help, support and advice from the perspective of someone who really does understand what you are going through. Kind regards, Maz
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