http://www.mdspatientsupport.org.uk/forum

Hello,
This is my first post so do bear with me! Iam 85 and was diagnosed 18 months ago with Low Risk (IPSS-R Score 2) MDS-MLD and write to ask: can anyone tell me how this condition evolves. Do I get progressively weaker or does/can the condition plateau? I realise every case is highly individual and it is hard to generalise, but there must be some collective sense of what lies ahead. The lack of treatment and palliative measures is particularly frustrating. Am I the victim of random, out of control genetic mutations which can only be monitored? It seems that way.
Donald

Hi Donald

I can understand your frustration at what seems like "nothing can be done" but,should you need them in the future, there are supportive treatments such as injected EPO, or blood transfusions which can vastly improve quality of life. If you haven't already watched this, do please go to our website and view the helpful explanation of low-risk MDS and the range of possible treatments. The speaker is Dr Dominic Culligan who is a clinical adviser for MDS UK and specialises in MDS.
https://mdspatientsupport.org.uk/low-r ... -patients/

As you say, there is a huge variation in how individuals respond to this disease but being in a low-risk category probably means that changes will occur very slowly, hence the need for active monitoring to check whether any intervention is needed. Another way to get a sense of what lies ahead is to attend one of our online meetings (if you haven't already?) where you can share your own situation and hear the contributions from a range of people with different types of MDS. Please look on our Patient Meetings page on the website for what meetings are coming up. The next one, on 30th October, sounds very interesting as we have a speaker on Lifestyle Medicine - suggesting what we can all do to put ourselves in the best possible health situation - despite our MDS or CMML.

I am personally in a Very Low risk category for CMML (similar to MDS) and was diagnosed 15 years ago with the disease remaining very stable.

I hope this helps a little.

Take care

Chris

Dear Chris,
Very many thanks for your prompt and reassuring response to my enquiry; greatly appreciated. I shall certainly follow up your leads; and now for my daily 30 mins mn the rower!
Donald