AML with FLT3-ITD mutation

Recent diagnosis
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Hi there 3 weeks ago I called 111 about a back spasm and got diagnosed with Acute myeloid leukaemia (AML) .No symptoms and early diagnosis. I’ve been undergoing treatment for two weeks now and this morning I discovered I had the FLT3-ITD mutation and I’m going to have to have a bone marrow transplant . I’ve been really strong and positive so far but this has come as a real shock , I then stupidly googled it !! My only real experience of leukaemia is one of my best friends who I watched deteriorate over a period of around 9 months 9 years ago :frowning: Is there anyone out there who can give me some positive thoughts r a good story or two please , to keep my spirits up

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Hello @Judeoffbeat

Welcome to our forum & thank you for your post.

We are so sorry to hear about your recent diagnosis of Acute myeloid leukaemia (AML).

We can only imagine that this is a huge shock for you and can be such an overwhelming time.

If you would like to talk things through with us, at any point, please don’t hesitate to call us on 0808 2080 888 to speak to one of our nurses over our free and confidential support line.

Do keep your treating team updated on how you are feeling too, so that they can support you as best they can. They may be able to refer you to support within the hospital if this is useful for you.

We have a webpage on small things we can do to support our wellbeing during challenging times. It talks through where people can access further support including psychological therapies etc - Blood cancer: mind and emotions | Blood Cancer UK

Please know that you are not alone in how you’ve been feeling. Some people find hearing from people who are going through similar things useful, so you may find these blogs useful to read through at a time that feels right for you

Our support service team can also look into local support groups available if this is something that you think would be beneficial.

In case it’s useful, we also have a section of our website specifically for people newly diagnosed with blood cancer. Another helpful service we offer is the ‘newly diagnosed’ emails, there are only 7 in total. You will be sent one every week, and they can provide great information for the first couple of months after a new blood cancer diagnosis, each one is different in content but will cover 'what to expect, consider or ask in your appointments, as well as practical tips and advice." You can sign up for these if you wish: sign-up-for-blood-cancer-support-by-email

We also have information about stem cell transplants on our page Blood cancer treatment types | Blood Cancer UK which includes a link to our Blood stem cell and bone marrow transplants booklet.

Apologies if this seems like information overload but hope that these links are helpful and that you can read over them at a time that feels right to you, as well as being able to come back to should you require these resources.

Hopefully others can also share their experiences with you.

Take care & warm wishes,

Emma (Support Services Nurse)

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