Chronic Myeloid Leukaemia

Hi I’m a newby on here for the first time . I havnt been able to find any support groups etc with what I have . I was diagnosed with Chronic myeloid leukaemia in June last year which was a huge shock .Having only been free for two years from invasive ductual breat cancer . I have really been struggling with day to day life as the treatment I’ve been on isn’t working . I’ve just come out of hospital two weeks ago after another blood transfusion. My first one was at Christmas. But my haeglobin level was lowest I’ve had . I finally started my new drug two weeks ago but the side effects I’m really suffering with . I’m struggling with fatigue . I try everyday to just get on with things as best I can always saying there’s always something out there with worse problems . It would be lovely to find someone with Chronic myeloid leukaemia who may understand what I’m feeling :heart:


Hello @Fee

Welcome to the Forum - I have replied to your other thread too, but realised that you had mentioned Support Groups on this one.
Hopefully you will get some good peer support on here from others with Chronic myeloid leukaemia, but if you are keen to join a virtual group or face to face group please have a look at the groups locally for you on: Leukaemia Care Support Groups
I hope you mange to find one near you. Do ask your Haematology Nurse for any groups that may run through the Hospital or local services.
Take care, Heidi.

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Hi @Fee a great big welcome and I am so glad that you have found us.
It sounds as if you have had a really tough few years.
I hope others may be able to help you
I bet both diagnosis were a huge shock to you.
I have Chronic lymphocytic leukaemia (CLL) but really related to your feelings of fatigue.
I was diagnosed 20 yrs ago and over the years I have got to know myself and learnt to manage my fatigue a bit better.
Since my diagnosis I do not deal with what personally stresses me well and that can bring on my fatigue it suddenly gets all too much.
My fatigue also comes on when I overdo it emotionally, psychologically, physical or practically. It can come on immediately or up to 48hrs after the event.
So I can pace my life a bit better.
Sometimes I need a nap, sometimes a sleep or sometimes fresh air and appropriate exercise, it’s walking for me.
Look after yourself and please do keep posting