Dad diagnosed with MDS with 12% excess blasts - scared

Hi there,

My dad is 68 and has just been diagnosed with Myelodysplastic syndrome (MDS), with excess blasts (12%). I’m terrified of what might happen to him and can’t imagine life without him. His white and red blood count are both down, and he has excess blasts.

Does anyone have any experiences they can share that were similar, and how it all turned out? I’ve been reading different prognosis online and some of them are so scary. He’s in good health otherwise, but has just been feeling really tired for the last few months, and a bit breathless. The tiredness seems to have ramped up over the past few weeks.

We’re waiting to see if he might be considered for a stem cell transplant - but that is also very scary. How likely is it to be successful? If the Myelodysplastic syndrome (MDS) seems to be progressing, would it be wise to go ahead with it, if it was an option? He’s close to the cut off age of 70.

He was diagnosed three weeks ago and nothing has happened yet - I feel like he should be getting medication, or something, to stop it progressing any further? Is this normal? He’s intermediate risk.

He’s always been so fit, and the life and soul, this is just such a shock.

I’d really appreciate any advice. Thank you so much.

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Hi @dantheman I am so glad that you have found us.
Although I have another blood cancer there is so much conflicting information out there.
I was diagnosed 20 yrs ago at 53 yrs old and the prognosis I saw was 5-10 yrs, well I am still here and my 70th birthday was my best ever.
You have entered a scary world that uses a very scary language of hospital speak. I have never been able to understand it.
I have found that there is a lot of waiting around and not knowing.
I have been a very lucky girl and always been on watch and wait (or active monitoring)
I could not explain to work what I did not understand myself. I thought, like you, that I would be immediately treated.
I am not a medical person but medical teams often want to see how our results change, or not, before deciding the way forward. It is not all about numbers, but individual…
This time will give you and your dad the opportunity to write down your fears, questions and practicalities to ask at his next appointment.
All questions are valid.
Yes, for many of us fatigue is a main symptom and my disease has given me the opportunity to re-assess my life and what and who are important to me. It has also given me the chance to get to know my fatigue and how to manage it.
I would say give yourselves lots of time, I found my shock took a long time to subside a bit.
Then try and just keep it in the day and please do keep posting. Be kind to yourselves

Hi @dantheman I don’t have and specific experience with Myelodysplastic syndrome (MDS), but I do know how scary it is to suddenly have your dad diagnosed with something so serious. My 82 year old dad was diagnosed with Acute myeloid leukaemia (AML) back in December 2022, he had 8 months on treatment, 8 months off in remission but has unfortunately just relapsed this week. But we go at it again.

Like your dad mine was always so fit and active, in fact just 2 months before his diagnosis he was driving a 4x4 around the Moroccan desert. The shock is awful and it will be a rollercoaster of emotions for you over the coming months. It will be hard to do, but do take time for yourself. You need your strength to be able to support him. But equally sometimes you many need to fall apart yourself. Have a cry, have a scream. Do what you need to do. But if this whole thing has taught me anything, it’s how surprisingly resilient we all are when we need to be.

Sorry I can’t be of more help, but I just wanted to say you are not alone in going though this. The community on this forum is fantastic to do keep coming back if it helps you.

I wish you and your dad all the best.

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Hi @dantheman,
How are you today? I am so very sorry to hear of dads recent diagnosis. May i ask how he is coping with everything?
You and your family must be going through so much uncertainty just now, so please do know that if you would ever need to talk things through with us, our support line is very much here for you- Blood cancer information and support by phone and email | Blood Cancer UK.

Can i ask, has your dad had a recent appointment with his haematology consultant to ask some of the questions you have highlighted? As you may realise by now a person’s prognosis is incredibly variable and depends on so many individual factors. Our webpage here talks more around Myelodysplastic syndrome (MDS) & particular risk groups- Myelodysplastic syndromes (MDS) prognosis | Blood Cancer UK. The question you have are all really important Dan and i would suggest noting them all down in preparation for your dads next appointment. Your dad may also have been given contact details for a key worker/ clinical nurse specialist who really are a great support in helping you understand everything a bit better.

Again please do let us know how we can best support you, take good care, Lauran

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