Swollen painful hands and feet - GIST, on Imatinib

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Hi all!

First time posting here, so apologies if this is the wrong place!

My mum was diagnosed with a 28cm GIST tumour, and has been treated with Imanitib for the last few months. She's been on and off it due to various other infections getting in the way of treatment, but has managed to take it the last three weeks continuously for the first time.

Recently her hands and feet have become very swollen and painful to the touch, and Oramorph and amitriptyline aren't helping with this pain. She's struggling to walk or do anything with her hands now.

Has anyone else experienced similar symptoms with Imatinib or other kinase inhibitors? Does anyone have any advice? Thanks in advance!

src60 1 month ago

Hi FenceCeiling

Welcome to our community, I hope you find it both informative and supportive.

My wife's cancer is different, Leiomyosarcoma and have no experience with Imanitib but with the symptoms you describe it sounds like calling up your mum's oncology team for advice.

I don't know if anyone on the helpline here might be able to help 0808 808 0000 or perhaps contacting sarcoma uk.

<<hugs>>

Steve

Yellowsun 1 month ago

Hi, firstly I want to check you’re in touch with the charity GIST UK - they have a helpline and lots of information. Secondly there is a Facebook group called UK GISTERS which is great for asking these questions too. My husband is on Imatinib and his side effects are more nausea and gastric issues. I’d definitely suggest ringing the UK GIST helpline. They will also suggest you check that you’re being treated at a specialist sarcoma centre. Best wishes.

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Swollen painful hands and feet - GIST, on Imatinib

Recently her hands and feet have become very swollen and painful to the touch, and Oramorph and amitriptyline aren't helping with this pain. She's struggling to walk or do anything with her hands now.