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Confused

I have been on hydroxycarbomide for 11 years following a diagnosis of ET. Recently my platelets went too low. Another bone marrow biopsy to check for progression. Thankfully all clear but they have now said they aren’t sure I ever had it as no sign in current bone marrow. They lowered my dose of hydroxycarbomide whilst doing the test but my symptoms came back so they’ve put them up again but now they want me to stop it altogether. They are doing a whole panel of bloods including jak2 but I am feeling a bit lost and confused. Has anyone had a similar experience

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Hi @shepherd86. I can’t help with your question but I’m hoping that somebody else can share their experiences :blush:

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Dear @shepherd86, so sorry to hear that you are feeling confused. On a positive note it is great to hear that your Bone Marrow Test was clear. I would presume that the clinical team are ‘re-staging’/re-assessing your clinical status to ensure that you are treated correctly at this time. I do understand that you feel lost but I am sure that your clinical team can give you reassurance soon. Do you have an allocated Clinical Nurse Specialist you could call for support? If you do need to talk things through please call the Support Services team: Blood cancer information and support by phone and email | Blood Cancer UK Take care Gemma

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Oh @shepherd86 I am not surprised you feel lost, confused and probably scared.
I find the medical jargon so difficult to understand, no, I haven’t had a similar experience but lets hope others can help more.
Gemma has given you good advice.
Now is your opportunity to write down all your fears, questions, thoughts, medical history, medications , allergies and practicalities so as you can cover everything you need to when you get and appointment. I have learnt to ask that follow up question to and ask for clarification if you do not understand.
Please let us know how you get on as we support each other on here and as @BCUK_SupportTeam say they are also there for you.

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Hi Shepherd86 - I can well appreciate your frustration and upset especially after 11 years on HU for ET and I do understand your situation - did you have a BMB originally when ET was diagnosed? As it would be good to discuss comparison of that on diagnosis and the current one you have had done. In your case you actually would want this current BMB to reconfirm the ET so yes whilst good it was clear of anything else, the upset is that the impression you have been given is no ET present, no fun after 11 years. I am an ET patient diagnosed 15 years ago and had BMB then. Yet five years ago when I also had more problems (in my case platelets going sky high again after 10 years on HU despite still being on high doses of it) - I clearly remember it being casually mentioned “oh maybe you never had ET after all” and I recall only too well how utterly hurt and upset I was - so I get your feelings completely. I had another BMB and the raft of diagnostics on bloods that it sounds you are having now - you actually have a good team if they are doing all these diagnostics, as they are quite recent in the last few years being able to do them and not all hospitals do them. They show in a lot of depth what is going on in someone’s blood and marrow in respect of MPNs so hang in there and see what that comes up with. Ask your consultant to explain to your clearly and how it effects you when a quick comment is made - I think things like that are said quickly off the cuff sometimes without understanding of the effect on the poor patient who then has weeks to think about it and not know what is going on (it does take quite a few weeks for those sort of blood tests to come in) - but the diagnostics often back up the ET diagnosis if it is unclear or definitive from the BMB. so hang in there until your next appointment and go armed with questions and emphasis the reassurance you need. In my case after weeks of worry and bewilderment my diagnostics and BMB confirmed the ET diagnosis of 13 years prior! - although I did in due course have to change to Pegasys interferon as HU wasn’t working any more. Keep us posted how you get on and know you are not alone, all the best

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