Hi I’m Hilary - 74 years old diagnosed with Polycythemai Vera in May 2024 but was recently re diagnosed ( after a 2nd bone marrow biopsy and NGS - Next Generation Sequencing) with Myeloproliferative neoplasms ('MPN')/Myelodysplastic syndrome ('MDS') (u) overlap. Initially I had venesections then Hydroxurea which caused my platelets to fall requiring transfusion. I have also tried Interferon but this had a similar effect on my platelets leading to second bone marrow biopsy. I am currently on watch and wait ( Active Monitoring ) .HaVing been extremely active until 2 years ago, horse riding, sailing skiing etc my main symptom is Extreme fatigue . I am hopeful that specific gene targeting medication will become available sooner rather than later - there is much in the pipeline for all blood cancer patients.
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Hi @Hilary777 and welcome to the forum.
Yes fatigue appears to be something that impacts on a lot of us.
Hopefully still managing to do things you enjoy.
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Definitely have to plan my days to include a 2 hour sleep most afternoons and early nights. I feel almost normal for a few hours each morning before th fatigue kicks in.
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Important to listen to your body and rest when you need to @Hilary777