What discussions would you like to see ... - Leukaemia Support

Leukaemia Support

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What discussions would you like to see on this message board? Please let us know if you have an idea which isn't an option below.

NicoleLeukaemiaCare profile imageNicoleLeukaemiaCare20 Voters
14
Lifestyle topics (How to live well, Mindfulness etc)
11
Specific Leukaemia topics
8
Lymphoma topics
6
Other (Please let us know)
1
Myeloma topics
9 Replies
Bittebitt profile image
Bittebitt

I would like to learn avout Cmml

Madmin1 profile image
Madmin1

Diagnosed with CML after a blood test and ALL soon after a bonemarrow test back in sept 2012 had a bonemarrow transplant in Dec 2012 then lymphosite infusion in sept 2013 and again in Dec 2013 in remission now though I'm checked every 2 months next check up 26 Jan 17 fingers crossed

bronx77 profile image
bronx77 in reply toMadmin1

Hope you stay well for many more years to come You have done really well for ALL

Try to stay infection FREE

Good luck Kevin

Madmin1 profile image
Madmin1 in reply tobronx77

Yes got the all clear again really pleased

bronx77 profile image
bronx77

How about an in depth discussion about stay ing INFECTION free

Dragongranny64 profile image
Dragongranny64

May I ask what is mindfulness and how it works? Also how do you avoid neutropenia? How does a bonemarrow biopsy work as a diagnosis? Thank you 😀

Str1960 profile image
Str1960

I would like to know more about long term use of drugs for controlling CML (I take Imatinib). Is this for rest of life? Will there be changes to its manufacture and might this have consequences?

Madmin1 profile image
Madmin1 in reply toStr1960

When I was first diagnosed with CML I was told I'd be on imatinib for life as a bonemarrow transplant was to risky you may become immune to them and be switched to nilotinib, or another similar drug

ZaraBW profile image
ZaraBW

I'm not sure if this is the appropriate forum but I would like a group that focuses on life post treatment. A survivorship area. Long term effects, mental health and on going support. Dealing with relationships, a new normal, exercise and physical health, ongoing problems due to treatment. How do people pick up the pieces?

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