Newly diagnosed with Myelofibrosis

Hello Everyone

I am a 66 year old lady and am newly diagnosed with a type of blood cancer called myelofibrosis. I understand this is a rare form of cancer but is there others in this community who have this cancer?  Thank you

  • Hi and a very warm welcome to the online community

    I'm sorry to read that you've recently been diagnosed with myelofibrosis and, although I had a different type of cancer, I know what a difficult time this will be for you.

    The online community is divided up into different support groups I'm going to recommend that you the myelodysplasia and myeloproliferative neoplasms group as that also covers people with myelofibrosis. This will give you the opportunity to ask questions, share experiences and get support from others with this type of blood cancer.

    To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. 

    When you feel ready, it would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help


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  • Hi

    Sorry to hear about your diagnosis. I didn't have this form of blood cancer but I had another sort back in 2012/13. You will probably be better to join the forum via the link below that I have provided.

    If you click on this link Myelodysplasia (MDS) & myeloproliferative neoplasms (MPN). this forum has recently been added to the other cancers forum as it was  recognised members wanted a dedicated space to talk about their cancers. This space is for anyone looking for support with myelodysplasia (MDS) and myeloproliferative neoplasms (MPN) including essential thrombocythaemia (ET), polycythaemia vera (PV) and myelofibrosis (MF).

    You’re more than welcome to join this group and start a discussion. To become a member of the forum, you’ll need to click the grey ‘click to join’ button towards the bottom of the screen. Then to add a post and start a discussion, you can click the ‘+new’ or ‘+’ button near the group title. You can then copy and paste your post above and I am sure there will be other members there in a similar position to you.

    Any problems joining that group just reply to me and I will help. Good luck


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