Hi @RUSS so glad that you have found us, welcome.
There are over 130 blood cancers and this Blood Cancer UK forum covers them all.
I have found that it often does not matter which blood cancer you have it is the fears, thoughts, emotions, questions and practicalities that we share, even the the isolation and loneliness.
I look forward to hearing more about you @RUSS and really look after yourself
I know its an old thread, but I also have mHES/CEL (but am PDFGRA/PDGFRB and FGFR-1 negative), so its technically CEL-NOS. I only ever met one other girl with it and she passed away last year.
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Hello there @eleanorb96, welcome to the forum. It’s great that you found us as it sounds like you’ve been diagnosed with a super rare type of leukaemia. I’m so sorry that your only experience of someone else with a similar diagnosis involved them passing away, that would affect my mood and so I hope you’re bearing up okay. News of these diagnoses can be stressful enough, I have found!
Blood Cancer UK and its amazing forum and specialist nurses can support any of us with a blood disorder, and here’s the BCUK information overview about leukaemia: Leukaemia - what is it, symptoms and treatment | Blood Cancer UK
Leukaemia Care has information about chronic eosinophilic leukaemia (CEL) which perhaps you’ve read but I’d say it has some great links and reassuring information: Chronic eosinophilic leukaemia (CEL) - Leukaemia Care
As I hadn’t heard of CEL I’m pleased to read it’s considered a type of Myeloproliferative neoplasms ('MPN') as these, from my non-medical understanding but lived experience, are well understood and have many treatment options.
I happen to live with Polycythaemia vera ('PV') which is in the family of Myeloproliferative neoplasms ('MPN'), and I note that treatments if needed with CEL are very similar to Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). Maybe you’d like to read more about those: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I’m unsure how recently you received your diagnosis but maybe you’d like to speak with the lovely BCUK nurses? They’re experts in blood cancer and can offer medical advice, links to other resources of relevance, and a supportive ear. Their free number is 0808 2080 888 (Option 1) and should be there tomorrow morning (Saturday) and weekdays.
While there may not be many folks around the forum with your exact diagnosis, you will find we all share many aspects of living with these disorders and perhaps a sense of understanding and community, so do reach out to others around the forum. If you’d like to find specific subjects simply use the search box at the top.
Hope that helps a little @eleanorb96, please know you are not alone with that diagnosis. I look forward to reading how you get on, and don’t hesitate to share here how you really are.
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