MDS & MPN overlap

,

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.

1 Like

@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 :wink:
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

3 Likes

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 :blush:

3 Likes