Myelofibrosis

[MariaB27]

Would like anyone's experience of myelofibrosis please

[LFCLove]

Hi Maria, I was diagnosed with Myelofibrosis in 2022. My bio has the full initial symptoms and history and I have posted my journey through medication, issues and finally a stem cell transplant back in August this year. If you click on my pic (Liverpool supporter) you can find it all there on my home page.

I hope this helps you gain some understanding of this condition. Please remember that all diagnosis are different and by varying degrees. I have found this health social network to be very helpful and informative.

I wish you all the best and am always happy to answer any questions you may have as is everyone on here.

G.

🤓

[MariaB27 in reply to LFCLove]

Thank you for you reply, it helps a lot to read other people's experiences. I'm a Newcastle supporter but I'll forgive you as I love Liverpool. I have attended yearly forums for mpn conditions for the kast 7 years and found them very helpful and met very interesting people. MF is all new to me at the moment but nice to know I have someone to contact, thank you so much x

[Inca]

Hi Maria,I have M F now after 11 yrs with P V. Iam treated with Jakavi( Rux) have injections every week for bone marrow.blood tests every 2 weeks & blood test for every organ each 3 months.Have blood transfusions when blood tests are low.Most of the time I manage my life ,a busy one ,proff sculptor ,dogs,but find I must rest as I do tire.I am 85 next month so I guess the age doesn’t help !I live in France,treated very well by hospital team ,my G P & nurse .I noticed your address ,,originally I am from North Yorks..Thirsk area.Keep going ,rest if tired

[Inca in reply to Inca]

sorry pad slipped,Best of Luck to you .We Northeners are tough!We survive! It’s the Viking heritage !

[MariaB27 in reply to Inca]

Thank you Inca, that has helped a lot, pleased you are doing well. I am usually very busy 80 year old, had pv fir 8 years and have mf need to see consultant on Thurs. For definite diagnosis, keeping positive when I get replies like yours. I know Thirsk very well, lovely place. Thank you xx

[MariaB27]

Thank you x

[Fika500]

If you put Myelofibrosis in the search box you will be able to see previous posts which you may find helpful. There are lots of treatments available now and ,as has already been said , everyone is different. Have your questions ready when you see your consultant . Best wishes.

[MariaB27 in reply to Fika500]

Thank you