CMML

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CMML

No. of entries: 4 | Posted on 14 Nov 2013 11:48
  • My husband Robert has just been diagnosed with CMML but was told he won`t be getting any treatment except for blood transfusion. we are so confused as to why doctors are in the dark and there are no support for us. we don`t know what to do next. why are the doctors not helping us?

    ROBERT

  • Hi Ann,

    So sorry to hear about your husbands diagnosis and that you are both confused at the treatment being offered. I don't know anything about CMML but if you join the leukemia group there should be members who can help and support you.  There is also a very good group were there are lots of spouses supporting their other half through cancer - Carers Only. Have a look, you may find it heplful!

    You may have already seen it but there is some very good and easy to follow information about CMML on the Cancer Research website that may help you understand why only blood transfusions are being offered at the moment. Here is the link:

    CMML - Cancer research

    And you can always telephone the support line and ask to speak to one of the nurses who maybe able to explain more to you and tell you what you could do next - they are great!

    If you are unhappy with the decisions being made about your husband he could ask for a second opinion. 

    It is awful getting a diagnosis and then not understanding why doctors have made the decisions they have.  Ask questions of them, ask for explanations and clarifications - there are no stupid questions, you just want the best possible care for your husband.

    And ask questions here too, in the groups. There is so much experience here!

    Anyway,welcome to the site 

    Kindest regards,

    Hiloa 

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  • Ann I am so very sorry to hear the news given to you and your husband Robert.  I strongly urge you to join the healthunlocked website as a member where there are some unbelievably knowledgeable people who know Leukaemia's inside out. There may be novel drugs that may be in trial which your husband may be eligible for. Is your consultant a CMML specialist? if not you must find one! the people on health unlocked may be able to help with this

    Best wishes to you and Robert

    Dave

    I have added you as a friend, if you have problems finding the site please contact me!

  • Hi Dave,

     How do I get the healthunlocked site?

    ann

    ROBERT

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