I have recently been diagnosed with Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN')-U. Currently on Hydroxycarbamide 7 days a week and low dose aspirin.
I was wondering if anyone who has this is willing to share what their journey has been like?
The doctors so far have said I’m a rare case as I also have 2 mutations with this diagnosis. They’ve admitted they don’t know much about it or how I will react to the medication etc. It would be great to hear from anyone who is also in this position as I’m not sure what to make of it all. Thank you
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My variants are JAK2 positive and non RARA 17% t(11;17)
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Hi @Dance101010, welcome to the Forum, though I’m sorry about the diagnosis that brings you here.
Hopefully some others here who’ve had a similar diagnosis will see your post and share a bit about their own journey.
In the meantime, we’ve got a page on Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap syndromes that covers causes, treatment (including hydroxycarbamide) and outlook, if it’s useful while you’re taking it all in: MDS/MPN overlap syndromes | Blood Cancer UK .
And our Support Line (staffed by our wonderful nurses) is there too if you’d ever like to talk it through with someone or have any questions - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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