I was diagnosed with Myelofibrosis 18 months ago it’s a rare blood cancer can anyone share their experiences of this type of cancer
Hi Rochdale AFC and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
As the online community is divided up into different support groups I'm going to recommend that you join the myelodysplasia and myeloproliferative neoplasms group, as the group also includes people with myelofibrosis, and you can then share experiences and get support from others with this type of cancer.
Clicking on the link I've created will take you to the group where you can then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.
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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"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Rochdale AFC and a warm welcome to the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.
I don’t have Myelofibrosis but I was diagnosed way back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand the challenges of this journey well.
The Community has various support groups (discussion rooms) so can I recommend that you consider joining our supportive MDS/MPN/ET/PV/myelofibrosis (MF) group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the Green (Bold) link I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
I will keep an eye open for you.
