Azacitidine no longer working

Hello. I’ve been lurking in this forum for a while but this is the first time I’ve asked a question. I’ve always been so struck by how kind and supportive everyone is.

My Dad (74) was diagnosed with Myelodysplastic syndrome (MDS) about 8 months ago. He had seven rounds of chemotherapy but was recently told that it hasn’t made a difference (his blood levels are comparable to when he started) so it won’t be continuing. Obviously, this is not the news we were hoping for.

His Consultant has advised that his prognosis in the absence of chemotherapy could still years but that if he were to, for example, get an infection then things could get very serious very quickly. I think my question is, has anyone else been in this situation? The absence of any significant intervention like chemotherapy has left us feeling like we’re a bit off the map.

Thanks everyone.


Oh @beck I am so glad that you have had the courage to post, from what you say it seems that you feel in a very isolated place, but a very caring offspring.
I hope someone will be able to share their experiences, but remember what his consultant said ‘his prognosis in the absence of chemotherapy could still be years’
Also I and most of us with a compromised immune system just realise that if we feel we have an infection coming on then we need to seek medical advice straight away.
I can understand your feelings of ‘being off the map’, I also had them with a different blood cancer, I think that is natural, but usually we are actively monitored at regular intervals, it can also be called ‘watch and wait’.
This might be by a GP or consultant.
Please do keep posting and let us know how you both get on.
Please do look after yourselves.