Hi I have recently been diagnosed with Myeloproliferative neoplasms (MPN) and Myelodysplastic syndrome (MDS) overlap and have been told it’s a terminal illness is this true they started me on injections but they are not working how can I find out how long I will live for.
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@Suzie39 firstly welcome to the forum no one wants to be on, but are glad we found it anyway.
Secondly, it really does sound like you could do with talking to one of the @BloodCancerUK-SupportTeam or following the links on this page Blood cancer information and support by phone and email | Blood Cancer UK
as they will have the clinical insights regarding your condition, especially as it appears rare. And on site full of rare cancers, that takes some doing 
Thirdly, many years ago working in Nottingham at Yates wine lodges (before they went modern and failed) we used to have long table discussions with everyone involved, docs, priests from nearly every dogma, hippies, trainee nurses, miners and factory workers, covering every topic under the sun.
One discussion always stuck in my memory, when a doctor said " we are all born terminal, but we get the choice of how our lives matter no matter how many hours we are here".
Knowing your best before and sell by date will not change your dance with cancer, it is how you wish to dance right now that matters.
When my granddad was told his last lung was finally dying with cancer, 60 years on one lung, he said “I have lived to see my grandkids, loved my wife and kids and had a good life, so why cry and just celebrate the days I have left” (He lived through the Coventry blitz and worked in car industry afterwards, beat Ray Reardon at snooker and ran dance classes with my grandmother)
I have Polycythaemia vera (PV), life time membership available only. At any given time, it could mutate, bring a couple of buddies along such as skin cancer. But my choice is to dance the days I have on how I feel. Tired days, well that is a slow dance at the end of the show, good days, lets just free style.
The point is, we are all a countdown to being part of nature’s great recycling scheme, acknowledging that fact and deciding on how you spend it in your heart, mind and body is down to you.
I hope someone on here can give you the medical answers, but that really should come from your medical team. Be strong as @Erica would say, be firm and assertive, write down your questions and stay sat until they have been answered honestly.
Take care of yourself
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Hi @Suzie39.
I can hear how worried you are in your post. @clickinhistory has given you some great advice and links to the support line which I think, if you feel up to it, could really help. They may support you in thinking about the questions you want to ask.
Emotions are all over the place at diagnosis and it’s a lot to process.
Please keep us updated 
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Hi Susie,
Welcome to the forum’ I was diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) overlap in early 2021. I am lucky as the Aranesp injections and hydroxycarbamide tablets are working for me and three and a half years after diagnosis and three spells in hospital, I am doing really well. The diagnosis was a shock, but I just try to keep taking the drugs and hoping that they keep working. I have a great haematologist and nurses who answer any questions I have. This forum is great for getting support and understanding. No one knows how long they have left, so I wish you well. Katex
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How are you doing @Suzie39?
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Hello there @Suzie39, welcome to the forum! I’m sorry to have missed your post until now. I see you were diagnosed with an Myeloproliferative neoplasms (MPN) and Myelodysplastic syndrome (MDS) and hopefully you’ll find you’re not alone here as many of us live with variations of them too.
I was diagnosed with an Myeloproliferative neoplasms (MPN) last year, Polycythaemia vera (PV), and can’t believe I’m typing this but treatment for it has become almost routine now. Have to admit that I haven’t read up much on Myelodysplastic syndrome (MDS) but I can see there are overlaps in how it and Myeloproliferative neoplasms (MPN) can affect our blood cell production, although treatments seem to be different and perhaps more intensive for Myelodysplastic syndrome (MDS).
Perhaps you’ve dug about and read what you can about Myelodysplastic syndrome (MDS) around the forum, but here is Blood Cancer UK’s research on Myelodysplastic syndrome (MDS) which you might find helpful: Myelodysplastic syndromes (MDS) | Blood Cancer UK
Here’s their Myeloproliferative neoplasms (MPN) information: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I see you already have @KateS sharing their experiences of living with Myelodysplastic syndrome (MDS) and Myeloproliferative neoplasms (MPN), which I hope is helpful. It really is a shock to be diagnosed with these blood cancers, like Kate says, and finding others here living with similar diagnoses can help it be more bearable and less lonely.
One bit of advice I’d offer is to be mindful when googling our blood cancers online as there is a lot of outdated and inaccurate information out there. I wouldn’t, for example, look up prognoses unless it’s official blood cancer research from a reputable source like Blood Cancer UK. Likewise, I’ve personally steered clear of social media blood cancer groups which also tend to be more about opinions than facts.
Do let us know how you’re getting on when you can.
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Hi
I was diagnosed with Myelodysplastic syndrome (MDS) almost 2 years ago and after a recent bone marrow biopsy have been told I now also have the Myeloproliferative neoplasms (MPN) overlap.white cells and platelets going up slowly and hb around 90. Currently having frequent bloods as I need a partial knee replacement and bloods need to be settled for this. Haematologist very good. Keep positive and merry Christmas everyone
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Hi @Helen2.
Good to get an update and is always good to hear that people are happy with their consultant. It makes such a difference!
Have a very happy Christmas x
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