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mother has myleofibrosis

14 Jan 2020 13:52


Im just looking for a bit of support/advice around this little-known disease.

My Mother was diagnosed with polycythemia vera in 2014. this has been managed reasonably well however recently my mam noticed she was becoming very short of breath and had a pain in her side (caused by her enlarged spleen). She's been diagnosed with Myleofibrosis which in itself was a huge blow to the family as my mother currently takes care of her own mother, and provides child care for myself and my sister for our young children. We werent made aware nor did we do any of our own research when she was initially diagnosed in 2014 so we had no idea that this is a progressive disease, or that its even a form of blood cancer! My mam is tiny, she weighs 7 stone 4lbs and has always been small. Shes now taking medication prescribed for myleofibrosis (jakavi) a.k.a Ruxolitinib while she waits for (hopefully) a stem cell transplant. The biggest issue my mam is facing (this may seem so small to many of you and I'd appreciate it if any criticisms or negativity could be kept to yourself) is that this medication is putting weight on her quickly. She's gained 4lbs this week and the same last week too. She's never been a gym-fanatic or ever even exercised apart from housework and taking the kids out. Im looking for advice on how I can help her to 1) maintain some sort of active lifestyle throughout all of the changes shes experiencing and 2) hopefully get some perspective from people who have experienced this first hand. Thanks for taking the time to read Happy

mother has myleofibrosis

15 Jan 2020 16:12 in response to beckyrob94

Hi BeckyRob94,

I'm sorry to hear about your mum's diagnosis. I work with people with blood cancers. It's not uncommon when you get a rare diagnosis to not recieve all the information that would have been useful at the time. 

In terms of maintaining an active lifestyle, I find Macmillan very useful on this particular subject. They have a specific programme that might help you: Or sometimes your local area has services that yourmum might be able to access if she speaks to her GP or hospital team. 

For your other questions, there is a charity called Leukaemia Care that runs a buddy scheme for people with blood cancers. They can connect up people who have blood cancer with each other (for your mum) or they can pair up you with another person caring for someone with blood cancer if you prefer:

Hope that helps!