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Recent diagnosis

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This topic contains 3 replies, has 3 voices, and was last updated by  Lisa Jones 6 months, 2 weeks ago.

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    Lisa Jones

    Hello everyone. My name is Lisa and I’m from the uk . Back in sept my dad (74)was diagnosed with mds after bloods and bone marrow test. Referred to haem by his doctor as his wbc were constantly raised after constant rountine bloods for his diabetes. We now have the diagnosis of MDS which under the same umbrella comes CMML ( chronic mylomonocytic leukaemia ) but according to the haem doctor it is not leukaemia yet but can progress to that . So MDs we are told Is classed as the “ pre leukaemia “ stage. His wbc count is 23.1 where as everything else seems stable . At the minute we are on a wait and see stage where we are going back to the hospital every 3 months for bloods and atm no treatment is necessary. My emotions however are on a rollercoaster and if anyone give I a diagnosis with the word leukaemia in it then u think I have blood cancer , however my dad doesn’t at this stage so the diagnosis alone is boxing our heads.
    I am so worried , well he is my dad .
    He is on low risk on the scoring system with a median of 5.9 years and 9 years before it could potentially turn to AML. It’s like we’ve been given a death sentence my world has just been rocked . I came across this forum whilst I was frantically searching for some comfort . His haem doc had described it as old age of thebone marrow where it’s not working properly – in simple terms . I’m relaxed to know that at this stage it isn’t leukaemia so been told to call it mds instead of CMML even though both are his diagnosis. It’s just that word “ leukaemia “ scares me. So mds is a pre state but in years to come it will transform. We have just had our 3 monthly bloods and whilst his wbc continues to slowly rise everything else is steady. Please can anyone give me some hope ?


    Allan Romriell

    Lisa, MDS is listed as a type of blood cancer. There are a wide variety of MDS classifications and statistically 30% or so of MDS cases advance to AML. I have a variation called RARS which mainly effects my red blood cells, my white cells have not been effected at this time so I am much different from your father, however we both have MDS. I am also considered low risk and on watch and wait for 18 months now with very little change. My world was also “rocked” with the diagnosis but I started research and found message boards such as this and that has helped me to deal with the reality I now live with. There is no cure except for successful Bone Marrow Transplant but many people live fairly normal lives for many many years with this. I hope things continue to progress slowly for your dad, all the best to you both.


    Amanda Russell

    Hi Lisa, have you found the MDS
    UK Support Group? They will be able to answer many of your questions and offer you support.
    I can’t manage to post the link from my phone, but you’ll find it on Google.
    Good luck with everything.


    Lisa Jones

    Allan thank you for your reply it seems we have yet to be told everything, from his doc we were told dad does not have cancer as that was my main fear and MDs was the pre cancer state , the ccells weren’t developing as they should and this is the pre state. I’m just so lost and scared.

    Amanda thankyou I have found the uk one now

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