Hello, 2 years ago i have diagnosis Essential thrombocythemia (ET) - Essential thrombocythemia, and my platelets increased until 900, and this summer begining was 1300 , doctors suggested using interferon, but today i get blood test and platelets decreased until 900 again and they suggested postponing using interferon, can anyone told me somethink about this situacion? its normal what without treatment platelets can decrease? thank you
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Hi
I was told that platelets go up and down all the time. I’m hoping mine goes down and that will hopefully put off going on the meds next year
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Hi there @Marijus89
Welcome to our forum and thank your for your post.
We are sorry to hear about your diagnosis of Essential thrombocythemia (ET). We can imagine this was a huge shock for you.
As @Happy2019 has mentioned, platelets can go up and down often due to a variety of factors. This could include certain medications, inflammation or infections (even if you didn’t realise you had an infection at the time, this could still cause them to increase and then fall once this has passed.)
Could we ask has your treatment team discussed repeating your blood tests in the next few weeks or months?
The decision for treatment will be based on your individual diagnosis, blood tests and symptoms as well as age and fitness. It may be useful to discuss this with your team if you are concerned or have any queries about this, so that they know how you are feeling and can support you as best they can.
If you would like to talk anything through with one of our nurses, please get in touch on 0808 2080 888.
Take care.
Emma (support services nurse)
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So, I guess now what is normal? Now doctors before blood test was to give me to use interferon, but now back to using aspirin. Now i do test after 3 months from today.
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Hello @Marijus89
Thanks for your reply.
Your haematology team/ consultant will be able to tell you what range they would expect your platelets to be. They may have decided this change back to aspirin as your platelets have decreased, but imagine they will be monitoring this to see if different medication is required based on your platelet count in 3 month’s time.
It may be a good idea to speak with your haematologist or clinical nurse specialist about your treatment plan and what to expect going forward.
Take care & warm wishes,
Emma (support services nurse)
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Hi. A year ago I was diagnosed with Essential thrombocythemia (ET) with a platelet count of around 500. I’ve been on a gradually increasing dose of Hydroxycarbamide and am on 1x500 mg tablet per day. However a recent increase of just one 500 mg tablet appears to have “tipped me over the edge” & I’m suffering confusion, hallucinations, breathing & balance issues along with general weakness. Bearing in mind I’m only on a small dose for a not very significantly high platelet count are my symptoms “ normal” ?
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Hello @Hoggie
Thank you for your post and welcome to our forum.
We are so sorry to hear about your diagnosis of Essential thrombocythemia (ET) and that your are currently experiencing some symptoms. We would advise you to contact your haematology team/ clinical nurse specialist as soon as possible regarding these symptoms.
If you are having trouble breathing we would advise ringing 999/ attending A&E or ringing 111.
I have attached the patient information leaflet on Hydroxycarbamide for you.
Patient Information Leaflet - Hydroxycarbamide (hydrea)
Muscle weakness, confusion and hallucinations are listed as side effects, however if you are having issues with your breathing this would require urgent medical evaluation and we would highly recommend that you were assessed as soon as possible.
Take care,
Emma (support services nurse)
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Welcome to the forum @Marijus89 and @Hoggie . We hope you find it useful. Emma has given you some very good practical information but if you ever just want to offload or discuss your worries, we’re always here to help and give moral support. Hope things work out for you and let us know how you get on.
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Hello there @Hoggie, welcome to the forum. I’m sorry to read of your diagnosis with Essential thrombocythemia (Essential thrombocythemia (ET)), and of those symptoms you’re experiencing from the increased dose of hydroxyurea.
While I live with Polycythaemia vera (Polycythaemia vera (PV)) rather than Essential thrombocythemia (Essential thrombocythemia (ET)), they’re closely related and treatments and side effects are often very similar too, from my non-medical understanding. I’ve taken 500 mg of hydroxyurea daily since diagnosis but a year ago my new haematologist increased my dose on 3 days per week to free me from phlebotomy, as he put it. Not that I was having blood removed that often after a year with Polycythaemia vera (Polycythaemia vera (PV)), but over the long-term I was told regular phlebotomy can cause other issues like anaemia. Now I need blood removed every 4-5 months as the blood cell overproduction caused by the Polycythaemia vera (Polycythaemia vera (PV)) has slowed down.
Anyway, I also experienced a bunch of side effects from increasing my hydroxyurea dose and it took a few weeks for them to decrease. Side effects were much the same as when I first started hydroxyurea, except the fatigue and chemo brain were less severe.
Like Nurse @Emma_BloodCancerUK says, do let your specialists know about those anxiety-provoking side effects. They need to record how your body is reacting to the chemotherapy they’ve prescribed and offer suggestions of how to manage it, and if not then you can ask for further clarification about how they will treat the confusion and hallucinations. You might be recommended to take the hydroxyurea in the evenings, if you don’t already, so the balance issues don’t affect you all day.
Personally, the side effects you tolerate would be dealbreakers for me taking hydroxyurea. The brain fog I experienced was very depressing as I couldn’t think through ideas or plans as before, but thankfully that faded over time. If I had hallucinations I would ask to be seen straight away by a specialist.
I hope you don’t have to tolerate those horrible sounding symptoms for long @Hoggie. Do let us know how it goes, and like @Franko suggests we’re here to support. Perhaps have a look around the forum for others taking hydroxyurea for Essential thrombocythemia (Essential thrombocythemia (ET))/Polycythaemia vera (Polycythaemia vera (PV)) and you’ll see you’re not alone in your treatment, nor its sometimes difficult side effects.
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