My mum is 74 and has just been diagnosed - advice needed

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My mum is 74 and has just been diagnosed - advice needed

Post by Rocketgirl9 » 14 Nov 2011 19:58


my mum (she is 74 but fit and in good health) has just been diagnosed with MDS and we were given two options re treatment. 1. intensive chemo (10 days of receiving chemo followed by 3-4 weeks recovery) delivered in 3 cycles depending how she responds. Option 2 is to get on Azacitidine (7 days in outpatient followed by a few weeks break).
We are still trying to figure out what would be the best for her. The thinking at the moment is for her to have chemo and see how that goes as the drugs used are much stronger but that brings risks in itself. But we don't know what impact that treatment is going to have on her, what to expect etc.
Any advice / tips would be welcome.
Has anyone at this age or similar been through this type of treatment?

Thank you
Posts: 335
Joined: 01 Nov 2010 17:54

Re: My mum is 74 and has just been diagnosed - advice needed

Post by janetstanford » 14 Nov 2011 20:21

Think you should contact Sophie she can discuss and give medical advice we can just share our storys give tips and support ect hopefully this helps :)
questions i have is what type MDS and why Chemo and 3/4 wk recovery ?? sorry do not understand this i know chemo is given 4 weekly ....
why has your mam been given the option of chemo or azacitidine

hope this helps i am sure others will post and help and at least you may come up questions for your doctor :)

please take care Janet :)
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Joined: 01 Dec 2009 21:52
Location: Essex

Re: My mum is 74 and has just been diagnosed - advice needed

Post by chris » 15 Nov 2011 13:39


Sorry to hear about your Mum's diagnosis of MDS. As Janet says we are a patient support forum and so can only offer up our personal experiences and support. You should find plenty on this Forum about experiences of using Azacitidine and Sophie does have up-to-date information about other current treatments.

A few questions I think you should consider:
    Is your Mum well at the moment or is the MDS giving her some problems?
      Is there any indication that the MDS has progressed to leukaemia?
        Have you been given information about the type of MDS she has and the severity?
          Is the hospital your Mum is attending a Centre of Excellence on MDS? It is quite a rare disease and some hospitals are not as clued up on the disease and current treatments as others.

          I think before you make any decisions you need to know what her diagnosis means for her and be able to weigh up the benefits and risks of both types of treatment she has been offered. Also, depending on how the disease is affecting her, she may feel she would like to delay treatment until the symptoms are more bothersome.Your medical supporters should be able to guide you on this as it would be difficult for a patient to make this decision without full information.

          Sorry to give you more questions than answers. Not sure where you live but there is an MDS Patient Forum in Cambridge on 2nd December which your Mum and her carers/relatives could attend.

          Best wishes

          Chris. (F) Age 71(2021). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex
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