I was diagnosed with Myelofibrosis about 7 months ago. My platelet count reached a million today and still no meds were prescribed. I’m only on an aspirin regimen for now. #concerned.
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Hi @closcott I am glad that you have posted again, I am not a medical person…
Perhaps I would have an honest talk with your specialist nurse, if you have on, or someone from your medical team.
In my personal experience a lot more is taken into account than one reading, we are all unique beings with individual medical histories.
Please do let us know how you get on and again in my experience concern and anxiety do not do me any good.
Be very kind to yourself and really look after yourself
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Thank you Erica for the advice and encouragement.
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Thanks for reaching out to us again. It is completely understandable that you are concerned.
Did you discuss your concerns with the team today? If not, it might be a good idea to reach out to your specialist nurse in the coming days to discuss your concerns and also ask when you are next going to have your bloods rechecked. They might be able to reassure you as to why only aspirin has been has been prescribed for you this time. Do you have any other symptoms at the moment?
I have enclosed some information here on looking after yourself when you have Myelofibrosis which you might find helpful looking after yourself with Myelofibrosis .
It can sometimes be very beneficial to get a second opinion about your Myelofibrosis and treatment opinions that might be available to you, especially if you are concerned. You may benefit by being referred to a haematologist who has an expertise in Myelofibrosis.
If it would be helpful to talk this through in more detail, please don’t hesitate to give our support line a call. We are open until 7pm this evening or tomorrow from 10am on 0808 2080 888.
Take care
Fiona ( Support Services Nurse)
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Hello again @closcott, glad to see you back!
I’m not a doctor but I do have an Myeloproliferative neoplasms (MPN) like you and keep an eye on my own blood cell counts. If my platelets were beyond the normal range of 450,000 per microlitre like yours I’d contact my haematologist to alert them.
Hopefully your specialists are aware of your blood test results? Our treatments aim to lower our platelets so I’d say do contact your doctors.
Do please let us know how it goes @closcott.
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