diagnosed with et about 4 years ago,started on aspirin, my platelets are now almost normal levels ,but hb slightly low,am worried that i might have myelofibrosis which seems very serious, any advice please.
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A great big welcome @glynis I am glad you have found us and your post sounds how worried you are.
This is really a question for your medical team, do you have a CNS (Clinical Nurse Specialist) as they know you and your unique medical history.
A handy hint is perhaps don’t search the internet too much.
We are here for you and if you want to talk to someone the Blood Cancer UK support is there for you.
You can say how it really is for you on here.
Please keep posting as I would be interested in hearing more about you.
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Thank you for your reply,i havent had a diagnosis as yet apart from et,the haematologist is going to keep monitoring me.maybe i should stop searching the internet.
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Hi @glynis,
Welcome to our forum. I am very pleased you have found us and thank you so much for sharing your concerns with us all. It is great that your platelet level is now almost within normal range- it sounds like your aspirin treatment is doing the trick.
In terms of your haemoglobin levels- the important thing to know is that this is being monitored. HB levels can often fluctuate for a number of reasons and if it does continually drop your GP will be able to look into this further & where appropriate prescribe relevant treatment, which is often really effective, but also understand the cause.
It is very normal Glynis to feel worried about Myelofibrosis and please do raise any concerns or question you have about this moving forwards.
However i would like to highlight as hopefully some reassurance for you that - “It’s important to note that less than 5% of people with ET go on to develop [myelofibrosis]”(Myelofibrosis (MF) - signs and symptoms and diagnosis | Blood Cancer UK).
Should you wish to understand more about the risk please see our information page here- Essential thrombocythaemia (ET) prognosis | Blood Cancer UK.
Don’t hesitate to get in touch with us Glynis should you want to talk anything through- 0808 2080 888.
Take Care, Lauran
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Thank you for your reply and advice ,much appreciated.
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Welcome to the forum @glynis. I can see lots of information has been shared already. Please keep us updated on how you are doing. It’s a great place to share and someone is always here to listen.
Take care X
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Thank you,appreciated.
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8 years ago i had pulmonary embolism. 4 days in the hospital on heparin and blood thinners, my dr. put me on Eliquis after I came home from the hospital. About 3 moths later my platelets started to rise to 700. My hemothalogist preformed a bone marrow aspiration and I was diagnosed with essential thrumbosthimia. He prescribed Hydroxyurea to lower my platelets. my platelets came down to normal in about 6 months. The problem after a year i lost my food taste. My doctor switched from hydroxyurea to Anagrelide. My food taste improved somewhat but not 100% I’m still taking 2.5 of Eliquis twice a day and 1mg of Anagrelide twice a day. My platelets are 250 in my last blood test. I’m 86 years old and 2 years ago I needed a pace maker. I feel pretty good for my age. So. I can’t complain. Do not worry about your platelets, .We have inexpensive medications that can bring you levels to normal. I do a lot of reading on the subject. As I understand you can live a normal life without affecting your life expectancy.
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A great big welcome @justind and I am glad that you have found us and posted.
It is also very useful to hear your experiences and medications
I am glad that you are feeling pretty good now
I am so sorry to hear about your lack of food taste as I know how much that I would be affected by that.
Yes, drugs often work so well but it is the side effects that are so hard to live with.
Look after yourself
Thank you, Erica. Just an update. My hematologist has decrease my Anagrelide dosage to 1.5 mg per day. It’s only been a week. But maybe it’s my imagination. My food seems to taste a little better. What I’m afraid is that my platelets will go above normal range. I’ll know in 3 months when I get my next blood test. Happy holidays.
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