Jak 2 alle burden result back today bmb confirmed Polycythaemia vera (PV) AND MY ALLE BURDEN 29.9% starting besremi in a few days
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Hi @djleighp thanks for the update.
How are you feeling about it?
Be very kind and look after yourself
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Well still feel shocked that I have a Myeloproliferative neoplasms (MPN) and that I got a reduced life span but it could be a lot worse it could of transformed so I’m grateful that I still got a few years yet let’s hope I’m ok with the medication and don’t get any side effects
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Oh I’m so sorry it’s been confirmed as Polycythaemia vera (PV) @djleighp. I think you suspected this might be the case, but I bet it’s still gutting. Glad you’ve got a treatment sorted out.
Just to add, my haematologist told me our lives should not be shortened by Polycythaemia vera (PV). In fact, I was reassured that we can live into normal old age with slight adaptations. It’s likely we won’t die from Polycythaemia vera (PV) but rather die with it, I’ve been told.
Keep us posted about how you get on with the besremi.
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Shock @djleighp took me a really long time to come to terms with so be ever so kind to yourself and please do keep posting how you are doing/
The Blood Cancer UK support line is also there for you on 0808 2080 888
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djleighp just wanted to say I hope the besremi works for you and that you have no nasty side effects. Starting any new medication is scary and worrying. Warm wishes Liz59
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Is it ok to vape as I know need to give up smoking also he said it’s Polycythaemia vera (PV) and Essential thrombocythemia (ET) even tho my platlets are normal don’t quite work that one out
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Hi @djleighp perhaps it might be worth talking to your GP or Hospitals smoking cessation programme or equivalent and get their opinion and support.
As for your platelet query perhaps that’s a question for your specialist nurse, if you have one, or your medical team who know you and your whole medical history.
Really look after yourself
Well confused here they have started me on pegasys interferon 45 to start the. Titrate up to 90 I said I thought there was a shortage they said they got plenty and gave me a load of boxes of injections just didn’t wanna start something and then if they do run out then have to start something again
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