What reality should I expect as my dad’s MDS declines?

Hi all. Obviously really aware that everyone’s experiences of these illnesses are different and specific medical advice is needed. But I wondered if I could draw on the experience of this group to learn a bit more about what lies ahead.

My dad has had an Myelodysplastic syndrome (MDS) diagnosis for a year or so. At first injections were started as the primary course of treatment but they didn’t seem to have any effect, so as of last autumn/winter he started transfusions. The frequency of these has already risen to monthly, which has happened faster than we expected or hoped, and he still has the same symptoms of fatigue, exhaustion, decreased appetite etc. He’s 73. It’s surprised me how fast his life has been changed by this illness (he now can’t walk far and is needing to rest and sleep a lot) and also how soon the frequency of the transfusions has risen. This makes me worry about the prognosis and timelines ahead of course (he’s not a case where BM transplants etc is an option).

What I’d especially really value everyone’s insights into is something I can’t easily find in my research: how his symptoms will change and decline over time and what the next few years will look like as his bone marrow deteriorates and his symptoms worsen. I assume for example that he’ll get increasingly tired, that he may need oxygen to breathe etc, but honestly this is my guesswork and I really don’t know! And that makes planning ahead harder.

Has anyone had experience of this trajectory of Myelodysplastic syndrome (MDS) and how it manifested? Thank you so much!


Hi @Allyd a great big welcome to our forum and you obviously care so much about your dad.
I cannot answer your question, but I would suggest that you and your dad, write down all his symptoms and how he has deteriorated. Both your fears, questions and practicalities and make sure that you cover all these at his next consultation.
Please also look after yourself as well as you are your dad.
We and the Blood Cancer UK support line on 0808 2080 888 are here for you both.
Please do keep posting how you both are and I look forward to hearing more about you.

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Hi @Allyd
I presume that you accompany your Dad when he has appointment with his consultant.
On one occasion when I was looking after my Dad I spoke to the consultant’s secretary before the appointment and said that I would value a couple of minutes of his time without my Dad there so I could ask some questions.
They took my Dad off to weight him and I was called in and had a chance to ask my questions. Not every consultant will be happy to do this but it is more likely if you have explained beforehand.
Best wishes

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