Hi
I’m new to this site. I was diagnosed with Myelodysplastic syndrome (MDS) with ring sideroblasts in 2017 but I have had high platelets throughout just under 600. I have been injecting EPO for past 2 years. Hospital have always thought strange but now saying it could be Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) with thrombocythemia? All seems so vague but I see from others on this forum that you have experienced similar combinations.
Disconcerting my hospital just says ‘strange’.
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Hi @LizM welcome to our forum and I am glad that you have been reading posts.
I have learnt to be pleasantly assertive with my medical team and I take all my questions written down.
I either speak to my specialist nurse, consultant or GP and sit there till I get answers to my questions.
We are all such complex individuals.
Perhaps ‘strange’ isn’t a medical term to you.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do let us know how you get on, I look forward to hearing more about you and really look after yourself.
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Hello LizM,
I diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap in January 2021. I had been ill for a few years before I was diagnosed, but since then, I inject myself weekly with Aranesp (EPO) and I am taking hydroxychloramide to control my platelets. They did come down to 470, but recently have gone up to 1000. My hydroxy dose has been increased to 2 daily through the week and one daily at weekends. I have really good haematology consultant and doctor, and also specialist nurses who are always on hand to answer questions. This combination of Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap seems to be coming more common, or perhaps more doctors are recognising the signs. There is a research programme going on at the moment. I have found this forum to be very helpful and supportive.
Best wishes and let us know how you get on
Kate S
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Hi @LizM perhaps don’t forget we are all very unique people with individual medical histories and everyone’s diagnosis and treatment or not is individually based.
Thanks Erica, I will remember that. All the best.
Just to say I sent an email to my doctor this morning and have already received a very comprehensive reply which is very helpful!!! So already well worth while looking at the forum, thank you.
He has also agreed to see me face to face to discuss more - past 4 years plus has been all phone appointment apart from one face to face.
Thanks to you and Kate for getting back to me.
Liz
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