Just FYI if you both want to share details you can do so via direct message so it’s kept private, for your confidentiality. All you need to do is click on their username and a red box will come up saying ‘Message’. That will take you to private messaging. Just keep in mind that this won’t be moderated. Cheers 
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Hi @BHPenfold i too have CEL HES with the same rearagement as yours but with a positve marker at the end. I was diagnosed in 2019 at the age of 29.
I am also in remission and in the Weston-super-Mare area id love to chat and share experiences as yes im am in remission but my heart has been affected and still not fully symptom free (always tired) being one of them.
If your still active on this forum hit me with a dm as i have only just seen this message passed onto me by my wife.
Have you had the trial of going off imatinib?
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Hi @Taylor90 a welcome to our forum and a great big thanks to your wife for finding this message.
I hope someone can get back to you with similar experiences,
Please don’t be put off the forum though because what I have found is that it does not matter what our diagnosis is we often share the same anxieties, emotions, thoughts and practicalities.
Look after yourself.
Hi mate, i have the same diagnosis as you. Myloid lymphoid neoplasm with fip1l1-pdgfra and eosinophilia.
I to have not found anyone to share experiences with though if you do happen to see this msg id be more then happy to have a chat.
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Hi @Kai_Perth a great big welcome to our forum and you have already showed a great value of our forum by reaching out to someone with the same diagnosis as you.
Being a nosey person are you in Perth in the UK or In Perth in Australia by any chance?
I look forward to hearing more about you and how are you doing.
Take lots of care of yourself and please do keep posting.
Welcome @Kai_Perth.
Great to have you here and for you to be able to share experiences with others!
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Hi @BHPenfold , sorry I didn’t pick up your reply last year. Been out of the picture for a while. Sadly my husband died in January from a brain tumour. His HES was stable and they said the two were not connected. Some time last year I think he had some interesting conversations with his CNS about research into HES and I think he printed off some of it which I may have seen recently. Will have a hunt later in the week and let you know.
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Oh @CarolT I am so, so sorry to hear your husband died in January, what a shock for you.
It sounds as if you are still trying to sort things out.
How are you doing and feeling?
We are here for you and so is the Blood Cancer UK support line on 0808 2080 888.
Be very kind to yourself, grieving is very individual and it takes as long as it takes to come to terms with a loss.
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Thanks for your reply @Erica Yes grief is very complex, good days and bad days and those confusing days in-between. It’s coming up to a year ago when he started having occasional headaches which didn’t raise any concerns to begin with. Not until we had a few days away and came home early as it became clearer things weren’t right. Sometimes it feels like a dream what we all went through in the past year. Today was a good day though as I met up with a schoolfriend and we had a good catch up.
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Hi @CarolT yes, grief is really complex and oscillating, yep, take it a day at a time and really look after yourself
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Hi all sorry i havent been on here in soo long if anyone is still active please reach out id love to hear how everyone else is coping with this leukemia and id love to share / swap stories
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Hi @Taylor90.
How are things with you and how are you coping?
I have lymphoma, not luekemia but I know there are lots of members who will be able to connect with you and share experiences
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Hi @Taylor90 great to hear from you again, how have you been over the months since we heard from you last.
Yes, we are still here.
I have Chronic lymphocytic leukaemia (CLL) and been lucky that my blood tests have stayed stable.
It is other conditions that I have that are causing me more challenges and appointments at the moment!!
I look forward to hearing from you with your update and you are part of our forum family .
Take lots of care of yourself
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