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My dad & CMML - Seeking a clearer idea of what it all means

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Hello all, looking for a clearer idea of what this all means really.

My dad has just been diagnosed with leukaemia (the CMML type most likely, but we’re still awaiting a bone marrow test for the final confirmation of type and severity).

I find the information on the internet very conflicting - Especially since we don't know the subtype of that subtype yet (I believe there’s a 1 and 2 even within the subtype of CMML?) and what this truly means for him. He's been softly told that people can live with this for years - but when I google, it says something quite different for median survival rates. I’m not wanting sugar coating; I really want to know whether this IS something that people live with and what it means for his life overall. I also don't want to panic myself unnessarily and worry if he's okayish for now.

I’m also looking for advise on living with someone with this and a compromised immune system and how I can keep him safe. Due to a big sudden bereavement of my own I still live at home but I need to go out often for work and I also travel a few hours away frequently. I’d love an idea of how careful I need to be around his immune system and ways I can make him as safe as possible other than the obvious kind of hygiene and covid measures.

Thanks so much in advance for any replies xxx

  • Hello and thanks you for your enquiry, 

    I am sorry to learn about your father and can appreciate you wanting to know more about what this diagnosis means for him. 

    I think the outlook for people with CMML (chronic myelomonocytic leukaemia) is probably quite variable and as you say will depend on various features of the disease. Some people whose disease has favourable features could be looking at years, but I don't think it is possible to second guess what the specialist will say about this once they have all the information they need.

    I think with the risk of infection, you need to take a steer from the specialist too as to how compromised your father's immune system is and what sort of precautions they would advise him to take. In general if someone's immunity is low there are sensible things you can do to minimise the risk of infection.  Another charity, Bloodwise, has more information about some of these at this link  .

    Our website  and the GOV.UK website has guidance specifically relating to COVID.  I think your father will need to ask his specialist if he needs a fourth COVID vaccine and also whether he is eligible to quickly access the new COVID treatments should he ever need them and how to sort this out. 

    I'm afraid the answers to your questions really need to come from your father's specialist and I hope they can tell you both more soon.

    Please give us a call if you want to talk anything over. Our number is Freephone 0808 800 4040 and we are here weekdays, 9-5.

    Best wishes, 

    Julia

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