My mum had a heart attack at the start of the year and was unwell for a bit and thought she was getting back on her feet but now she has recently been diagnosed with mylofibrosis ( Blood and Bone Marrow Cancer ) she has just started her treatment and taking hydroxycarbamide. I have a load of questions and want to find out as much as I can about her condition. Plus I want to know what I can about it. I don’t know if that would help me process it better or what. I basically just looking for anyone going through the same thing that can help give me more information or what questions I should be asking . Thank you. Love to everyone going through this x
real stories from other friends and family members.
You can also listen to our Blood Cancer Heart to Heart podcast where people share what it’s like to have a loved one diagnosed with blood cancer.
I’m a blood cancer patient myself and I remember how difficult it was and still is, for my friends and family to take everything on board, nevertheless they all remain very supportive and I am blessed to have them. Clearly you are a very kind and caring family member, and I hope you find the forum supportive and do let us know how you get on.
Hello there @Kez, welcome to the forum. I’m so sorry to read of your mum’s heart attack, health changes and subsequent diagnosis with myelofibrosis (MF). It’s really thoughtful and caring of you to join the forum to support your mum, and I hope it can be of support for you too.
While I was diagnosed with a different blood cancer to your mum called Polycythaemia vera (PV), it’s in the same closely related group as MF called Myeloproliferative neoplasms (MPN). Here’s the great Blood Cancer UK information about Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
For what it’s worth, I’ve taken daily hydroxyurea since diagnosis and can share my experiences, but perhaps for now you and your mum might like to read the above. I promise it starts to become almost routine in some ways.
Please come back and ask away as I’m sure lots of further questions will come up, and may I suggest writing them down to ask your mum’s haematologist and other specialists too.
You can also call the lovely specialist nurses at Blood Cancer UK, their number is 0808 2080 888.
If you look further around the forum you’ll find many of us living well with these Myeloproliferative neoplasms (MPN). Personally speaking, I never thought at diagnosis that I’d be able to tolerate all this but 2 years later I’ve got into a sort of rhythm with the blood testing and medicines and am back to mostly normal energy levels. I hope it’ll be the same for your mum too.
Please do not hesitate to ask the forum anything that might come up @Kez.
I think it’s really useful to get all of the information you can. I was the same when I was diagnosed with a different blood cancer.
I’m glad you’ve found the forum as they will provide you with all the information you need as easy to go down the Google search route which isn’t always helpful!
Are you able to attend the appointments with your mum? Get all those questions written down ready to ask.
Remember every journey is different. However, there is so much value in sharing our experiences.
Please take good care of yourself as well. It can be hard for family.
She had another appointment today with her consultant and I had a few questions I wanted her to ask him. he said she doesn’t have Mylofibrosis. She has Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)). So I don’t know why they told her she had MF at her last appointment. So apparently now she has all 3. Which I’m just so confused by.
She’s to go for a scan for an enlarged spleen and will check her liver also.
I just don’t know how to feel about it all if I’m honest. Has anyone found anything that helps them . I just really want to research and find out as much as I can about her condition.
But don’t think that’s something my parents want me to do .i fell as if it’s my way coping with everything that’s going on. If that makes sense.
Hi there im 76 years old and ha e had Myelofibrosis for nearly 5 years started of on Ruxolitinib which stopped helping after 6 months had bine pain and sweats and itching back then my consultant put me on fedratinib and up until couple months ago I was the only person on it now 2 more people are on it .It has been 4 years now and apart from being anemic last year for which I had iron infusion I am doing OK..each person is different and it’s scary at first but you soon learn how to cope with fatigue and just take each day as it comes I hope this has helped
It’s lovely to hear from you and even better to hear you are doing well.
I think it’s really useful to hear how people are doing at different parts of their journey. I agree, as time goes on you get to understand your body and what works for you.