Leukaemia

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Hello

I have just joined the Community but have been a Macmillan volunteer for 6 months.

Does anyone have experience of AML Leukaemia & sepsis?

I'm trying to support a friend, so any insights would be helpful.

Thank you

  • Hi  and a very warm welcome to the Macmillan Community but sorry to hear about your friend's diagnosis. 

    I have a completely different type of blood cancer (NHL) and treatment journey and I have had Sepsis a number of times…… although scary, clinical teams deal with this all the time and it often happens in blood cancers due to the nature of treatments and how the blood reacts.

    The New to Community is like our reception desk where we try to direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated……

    Acute myeloid  leukaemia

    …… support group. This group is a safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

    As for the practical and emotional challenges of supporting your friend and indeed yourself you may benefit from joining and posting in our……

    Family and Friends

    ……. support group where you will connect with a wide range of members navigating the exact same support challenges.

    To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [ Black - Click to Join - Banner ] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [ + Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you for the information.

    I have read the suggested links and feel I have a greater understanding now.

    Thanks & regards. 

  • Sepsis isn't uncommon with blood cancers. I had lymphoma rather than leukaemia. I was told to go straight to the ED if I had a temperature of 38C or more and I was given a card which said what specific tests they needed to run and what to do based on the results of those tests. 

    Because febrile neutropenia is a medical emergency, they don't wait for the results before starting the sepsis protocol.  Time to initiation of treatment matters a lot, and the guideline here is that antibiotics be started within 30 minutes.

    I had one bout of it which was actually detected during a routine follow up appointment with my haematologist.  I didn't even feel ill at the time.

    The main message is to be aware of the possibility and get medical help ASAP if you feel unwell or have a temperature (the guideline for me was 38C).