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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

MDS progression

1 reply

FancyNewt · 08/08/2025 11:55

My DM has MDS. Diagnosed 3 years ago with a 2 year prognosis, so we've had extra time. In a way I think it's given us a false sense of security. She's been well managed with a low dose of chemo for the last 18 months after a decline.

However, she's started to lose weight and is very anaemic so it seems like the chemo isn't enough. The doctors are trying an injection to increase red blood cells and blood transfusions.

Obviously we know what the MDS will progress at some point and this is where we are. I just want to know if there is any way of telling how long this may go on for, or to what extent she may be able to recover her quality of life at least short term. I feel bad basically asking how long she has left, but it's been like a rollercoaster for the last few years and I just want to gauge how far down the track we are.

OP posts:
Mulledjuice · 03/09/2025 22:37

A friend with 2 doctor siblings suggested to me that "would you be surprised if xxx" is quite useful language to use with doctors eg "Would you be surprised if we needed hospice care within 6 months".

Do not feel bad about wanting to know whether you're 6 miles or 20 miles through a marathon

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