Very High Risk MDS


My husband was diagnosed with MDS four months ago and is being treated with Azacitidine. We've had it confirmed that his R-IPSS score is 8.5, putting him in the  Very High Risk category. 

Just wondering whether there is anyone here with any experiences of Very High Risk MDS that they feel they could share? 

With the Covid restrictions being lifted, an already scary situation feels even more scary.

  • Hi  and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

    I don’t have MDS and holding back to see if any other group members would be looking in to connect with you.

    As always you can look through the various posts and hit reply to any post to see if the member is still active on the site.

    Talking to people face to face can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and do run specific Heamatology Support Groups.

    Anyways around if you just want to chat.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hello 
    Welcome to our MDS group although I’m so sorry to see you here, like Mike 
    I was diagnosed with MDS way back in March 2015. It was quite a shock, I’d been living with anaemia for a few years before that. I had also been diagnosed with another blood condition, haemachromatosis and I had a hunch that there was something else in the background because I had seen a consultant who was sympathetic and told me that if I wanted to talk, he would always be there. When my diagnosis came, it was like a bolt from the blue.
    I have low risk MDS yet there’s always a chance that it can turn into an aggressive leukemia. I’m sorry to hear that you have high risk MDS but always bear in mind that significant developments are happening frequently regarding cancer cures.

    How is your husband coping, is he bearing up well? He's very welcome to join our community, there are many lovely friendly people here in this group always ready to advise and listen at all times.

    Take care and stay safe Hattie

    Tvman x, 

    Love life and family.
  • Thank you  and  your replies are much appreciated. Thank you for mentioning Maggie's Centres, I hadn't  thought of linking with them, but I'll  certainly look into it now!

    Until July last year my husband was fit and we'll and walked a few mails every day as exercise. No underlying health issues, no regular meds, nothing problematic at all. At the end of July he had an episode of collapse on one of his walks and had to be brought home. At the time he put it down to dehydrationn /sunstroke  as it was during the really good weather. He was cross with himself as he is a seasoned walker, and in his younger days  was an experienced runner, so felt he should have been more aware. A month later it happened again, in cooler weather.  He also developed  a nasty rash. This combination  of events rang alarm bells with our  GP and bloods were taken. 3 days later  a call from the GP telling us it looked like MDS  and an urgent Haem referral was made. 

    Within 2 weeks he had an initial telephone consultation  and an appointment for a bone marrow biopsy shortly after. We waited a while for full cytogenetic results, but the initial results already pointed to High Risk MDS. Sadly the cytogenetics were about as bad as they could be, so his IPSS-R Score is 8.5.

    He's finishes his 4th cycle of Azacitidine today and although his platelets and WBCs are improving, maintaining his Hb is a struggle. He is effectively house bound which doesn't suit him at all! He has a dark sense of humour which is serving him well, but we're  struggling to find things to look forward to and we both find that difficult.

    I seem to have rambled on here, so I'll  just say thank you both again, and hope you remain stable for years to come! x

  • Hi Hattie, my Dad has MDS so I can fully appreciate and empathise with you surrounding the daily struggles for the patient and the impact this has upon the whole family especially close loved ones. Did you contact Maggie’s Centres? I’m one of Dads main carers and fully appreciate the impact such a diagnosis can have upon one’s own mental health etc. If ever you need a chat don’t hesitate to drop me a line. Take Care sending love to you both Nicola xx

  • Hi  so sorry, I've only just seen this.

    My husband has just finished his 6th cycle of Aza and is having a bone marrow  biopsy on Monday to assess progress. He's currently doing well; hasn't needed a transfusion  fir over a month (which is amazing!) and his Hb has remained over 90 for three weeks, which feels miraculous!)

    Up until this point all the 'vibes' around us have felt quite negative , but tight now  things feel a little better. I'll take that as a positive until I know differently!

    Me? I have good days and bad days, but right jiw they're mostly good - considering that, in effect, Ian is shielding whilst Covid is still rife.

    Thank you so much for your reply  your offer to chat means a lot.  Maybe, one day. x