Hi i was diagnosed, with Essential thrombocythemia after having a bone marrow biopsys , along with Behcets disease .Due to extremely high platelet count i was prescribed Hydroxyurea 2 tablets per day and have bloods taken monthly platelets came down slightly , but felt really unwell UTI platelets up to over 1000 again so Hydroxyurea now increased to 3 tablets each day , severe fatigue dizziness and fainting episodes , after explaining to oncology they now think i also have POTS syndrome , i asked if blood cancer was progressing and was told my platlets have been this high since 2019 and nothing was done ,i know something not right and feel doctors dont believe me and medication should be workingobviosly its not i apologise for the lengthy story how long will i have to take this amount of Hydroxyurea , are their any symtoms or signs my blood cancer is progressing thanks annemarie
Hi @Annemarie.
First of all, please don’t apologise. On here you can say how it really is for you so I’m glad you found us!
I can hear in your post how worried you are and you have asked some really good questions. I’m sure others will share there experiences but I would suggest you take these questions, and any others you have to your medical team. Each journey is so individual and they know you the best.
As I said, I know others will be able to share their experiences and I know you’ll find so much support with in the group.
Remember, the support line is there if you want to talk things through.
Please take really good care of yourself x
Hi @Annemarie I an so glad that you have found us and @Nichola75 has given you a great response.
Don’t forget you are not a medical person so it is fine to ask your questions and ask for clarification if you do not understand their replies.
I think this is a safe space where we can say how really feels on here.
Please do keep posting how you are and doing,
Be very kind to yourself you are going through a lot.
Dear @Annemarie,
Welcome to the forum, I am sorry you are having a difficult time at the moment.
You have raised some really valid questions and I agree with the other comments here, you can absolutely take these to your treating team for better explanation. Perhaps asking them what the next step will be if your platelets continue being stubborn.
Please do contact us if you would like to talk through some of your worries, our number is 0808 208 0888 and perhaps we can talk in a little more detail about the treatment pathways for Essential thrombocythemia (ET).
Best Wishes,
Heidi J (Support Services Nurse)
Hello Annemarie - sorry to hear you are not feeling too good just now - it’s a lot of adjustments when diagnosis comes and treatments start isn’t it. I am also someone that deals with Essential thrombocythemia (ET) diagnosed 18 years or so ago - I had 13 years on Hydroxy and last five years been on Pegasys interferon. First of all the symptoms you describe are very “typical” Essential thrombocythemia (ET) symptoms especially when the platelet counts are high - it’s thorough that the hospital is checking re POTS also but it may well be it is your Essential thrombocythemia (ET) for now until the treatment level that is effective for you is found - hope your haem consultant is a Myeloproliferative neoplasms (MPN) specialist as that helps and perhaps also there is clinical nurse in the dept that you can get some help from? Also do please know that the dose levels of Hydroxy going up is not an indication of the disease being worse or progressing - MPNs are very individual to each patient and some will be well controlled on their blood counts with 3 capsules a week, the next patient will be on 3 or 4 a day - so very different doses for the same condition. All my years on Hydroxy I always had the higher doses of 3 or 4 a day and had the level constantly tweaked up and down, that was normal for me. Do keep asking everyone anything that concerns you both at hospital and here as well - all the best
Hi jilly thankyou for your kind response. I am on 3tablets per day 21 wk , i just feelvreally unwell hospital are unsure if my Behcets is fighting against Essential thrombocythemia (ET).finding it hard dealing with 3 conditions at once and only just been told my platlets have been in the danger level for the last 5yr even after having sepsis nothing was done about it until i had bonemarrow biopsys in dec, im just scared this progresses into Acute myeloid leukaemia (AML) kind regards annemarie