I have recently been diagnosed with Essential Thrombocythemia and been on 500mg of hydroxcarbomide daily for about three months. During that time my platlet count has come down from 926 to 500. For the last two months I have been experiencing abdominal pain and discomfort. Also some mild headaches and feeling lightheaded at times. I had a telephone conversation with my consultant a few days ago and after telling her this, she told me that I also have too many red cells. So they are having me in soon to remove a pint of blood. Is this common. Any advice would be appreciated.
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Hello there @Terry1950
Thank you for posting and welcome to the forum. I do hope you find support here from all the fantastic members.
I am really sorry to hear that you have been having the symptoms you mentioned. I am glad that you have mentioned them to your Consultant. Do you think that these symptoms are related to started the hydroxycarbamide?
In terms of your high red cells, were you told that your red cells have been higher previously? By that I mean, is this new for you or have they always been that way? I ask this as if they have been that way for some time, your symptoms may be the reason the Consultant has decided to do a venesection (blood removal).
You will see on our What is essential thrombocythaemia (ET)? | Blood Cancer UK webpages that some people with Essential thrombocythemia (Essential thrombocythemia (ET)) also have features of another type of Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) called polycythaemia vera (PV). Essential thrombocythemia (Essential thrombocythemia (ET)) and Polycythaemia vera (Polycythaemia vera (PV)) have a lot in common and occasionally, they can overlap. This would be something to talk through with your Consultant or Clinical Nurse Specialist about as they will have all your results with more context.
I do hope that you feel better soon and that you get some more information from your team.
If you do need to call us, please do not hesitate: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
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Hi Terry950,
Welcome to the forum. You’ll find lots of advice on here, not just in the excellent resources but on old conversation threads.
I nor anyone except the specialist staff on here can or should give medical advice. But to share experiences (bearing in mind I have Polycythaemia vera (PV) not Essential thrombocythemia (ET)) when I was first diagnosed I had a pint of blood taken several times during the first few months but have not ‘donated’ any more for about a year. I personally had no noticeable side effects on hydrocarbamide but that doesn’t mean you wont, I know some people do. During my first few months I had abdominal pain but this was caused by my spleen and the hydrocarbamide helped relieve it. Best to ask your medical team when you see them.
It can be helpful to write thoughts and queries down when you think of them and take them to your appointment. It’s easy to forget questions when you’re actually with your consultant especially if you have received some new information as you are too busy absorbing that to remember your questions.
Take care and good luck.
Pedro
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Hi Gemma, thank you for the advice. As far as I can see, the high red cell count has only been over the past 18 months since my platelet count started rising. When I am at the centre next week I will discuss with the nurse.
Kind regards, Terry
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Hi Pedro, thank you for the response and advice. Plenty to think about.
Terry
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