MF

[Grizly]

I’m 67 and about 2 years ago was diagnosed with Myelofibrosis with no real symptoms it was picked up with a routine blood test. Still in a bit of shock even now. I have avoided google and the like. Stem cell replacement had been ruled out I guess because of my age. But I can’t except that there is no other treatment or course of action that could be of benefit.

[Mazcd Partner MPNVoice]

Hi Grizly, completely understand that you are still in a bit of shock about your diagnosis, it is a lot to come to terms with. I would suggest that you discuss treatment options with your haematologist, for either now or sometime in the future. Best wishes, Maz

[Ticotopia]

Hi Grizly, the same Happened to us. Just a routine medical. My husband complained a little bit about is growing belly and I told him to cut back on the beer…😀.It turned out that it was an enlarged spleen. He is like you that at the moment he has no other symptoms many other patients suffer. It seems that you are in the same boat and I hope that it remains like that for many years. Glad you found this forum.

You will find loads Of information and very nice people here. Take care for now.

[JediReject]

Hi Grizly , sorry to read of your MF diagnosis it took me a good while to come to terms with mine so I can empathise. What I would say is that it's good you seem to be in the early stage with no real symptoms and MF can be a slow burner. As Maz advises it's best to discuss your treatment options with your Haematologist when he or she feels the time is right.

Not a bad thing to avoid Dr Google as much of the information is either speculative or outdated. If you do stick to reliable sites like MPN Voice .

You may never need the transplant option but older folk than you in the UK have had a stem cell transplant. At my clinic the oldest I'm aware of is 76.

Good luck going forward .

Chris

[Cja1956]

Hi, Grizly, I understand your frustration but there are definitely treatments for MF. I am post ETMF and only a couple years younger than you. I need to find a more competent hematologist to guide you through the proper treatment. There’s not a cure but there are medications out there that can slow down the progress and give you a better quality of life. I take hydroxyurea, baby aspirin, And a drug called Fedratinib. However, I live in the US and I don’t think Fedratinib has been approved yet in the UK if that’s where you are.Good luck to you!

[Cja1956]

I meant to say *you need to find a more competent hematologist.

[Grizly]

Many thanks for the replies, it’s really good to hear from fellow I was going to say suffers but that’s the wrong word maybe survivors is more appropriate. It has raised my spirits to know there is good support within this group (with out the woe is me) great positivity. Again thank you all

[Wyebird]

Yes a huge shock. Maz has given sound advice. Sending hugs xx

[Cazbolac]

Hi. I was diagnosed with Primary Myelofibrosis 6 years ago. I was 49 when diagnosed. So far I have been relatively stable and not even needed transfusions. I am on Ruxolitinib which has helped me so far. It is a very difficult disease to live with because of the complicated nature of it. However you can live a relatively normalish life if your symptoms allow. There are more treatments available now to manage MF than there were even 6 years ago. Keep up the fight. Good luck.

[MaggieSylvie]

Hi Grizly, It is shocking when you get a diagnosis that you weren't expecting, that baffles you as well. I went through this when diagnosed with MDS/MPN 18 months ago. I have learned that what matters is how you are actually feeling. Having the diagnosis means that they are ready to "catch you" should you ever "fall". I've just received an unexpected blood test form from my haematologist and it looks as if now they are looking for hyperparathyroidism and I haven't a clue what that is all about! I go for tests on Tuesday next week.

[hunter5582]

Welcome to the forum. Glad you found your way here. You will find plenty of support and information about MPNs here.

There are definitely treatment options for MF. It is important for you to educate yourself about MF and what your treatment options are. Random Googling is not the best approach. There are very good sources like - Voices of MPN, MPN Advocacy & Education International, MPN Forum, MPN Mate, and more. Please take the time to educate yourself at your own pace.

The best thing to do at this point is to consult with a MPN Specialist. Most hematologists do not have the KSAs to provide optimal treatment for MPNs because they are so rare. Here is a list of docs with MPN expertise recommended by other MPNers.

mpnforum.com/list-hem./

All the best to you.

[Otterfield]

I am post ET MF, and was diagnosed last summer. I completely understand your shock - it's alarming to think of what is going on in our bodies. There are certainly treatments - I am on Ruxolitinib which has worked wonders for my day to day well being. I had two weeks in hospital when I was diagnosed as I needed to be on a saline drip for dangerously low blood sodium. While I was there one very experienced consultant told me, when I was at my most fearful, that "People live for a long time with this." I have also benefited from the huge amount of support and advice on this forum. You are right to avoid Google. Best wishes to you, Jennie

[Mrs_Average]

Hi Grizzly. I am post ET MF, diagnosed a few years ago.. I try not to count... all the advice here is good. I have found this lockdown year hard as Ibfeel that my general health is not as good as it was, I do a lot less exercise and that has had a knock on effect on diet and fatigue... I am working on these now as I know it is the key to me feeling stronger, once over this hurdle I hope to be back to myself. I am 52 and still work full time. Stay positive 👍