Our new Living well series: Hi all, This... - Leukaemia CARE

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Our new Living well series

NicoleLeukaemiaCare profile image
NicoleLeukaemiaCareAdministrator
5 Replies

Hi all,

This week we officially launched our latest booklet, Living well with AML. It can be downloaded on the Leukaemia Care website and you can order free copies too.

Later this year, we will launch Living well with CML, Living well with CLL and Living well with ALL.

Are there any burning questions or topics you'd like explored in those booklets?

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NicoleLeukaemiaCare
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Marie_14 profile image
Marie_14

Nicole when my husband was diagnosed with Atypical Chronic Myeloid Leukaemia there was only one sentence in a McMillan Leaflet! It was very difficult to get any information. I know it is not the same as CML but would it be possible to at some time do a leaflet at least, for future patients?

Marie

NicoleLeukaemiaCare profile image
NicoleLeukaemiaCareAdministrator in reply to Marie_14

Hi Marie - you're right, there is very little information out there. We've currently got a huge list of information we want to see produced, and in 2019 there is going to be a document on this form of CML. I know its not that soon which will be disappointing but it is coming!

Marie_14 profile image
Marie_14 in reply to NicoleLeukaemiaCare

Nicole that is really good to know. It is hard whatever the diagnosis but when there is virtually no information it makes it worse.

I am glad to say there is information and treatment if you know where to look. However when you hear the news you expect you will be given that information. We had a Haematologist who didn't do that and was ready to give up! That was on good days!

So we got a second opinion and the consultant couldn't have been anymore different if he had tried! Thank you Christie's!

Marie x

2003UK profile image
2003UKChampion

Hi Nicole

Brilliant booklet, many thanks to you and all at Leukaemia Care for all your hard work on this.

UK-Sparky profile image
UK-Sparky

Look forward to reading living well with CLL Nicole

Marc

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