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Long term side effects chemo

Somsia
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Hi, I'm relatively new to this. I just feel a bit lost and was hoping that someone can shed some light or guide me towards the right direction. 

I have been on Imatinib targeted therapy for 3 years. I am facing long term side effects which is as follows: Joint pain, body pain. Chronic fatigue, insomnia, dry eyes, forgetfulness, I'm slow and my thinking is slow, there's brain fog, heart palpitations and severe anxiety. 

Unfortunately my GP is dismissing it as minor and apparently it's mainly in my mind. I am using crutches and have adaptations in house. I feel like my medical team is not taking it seriously and I feel like they think I'm making all of this up. I was a teacher, hardworking individual. And now I feel silly and made to feel like I'm just complaining. 

I spoke to my GP, rheumatologist and they are dismissive about the side effects. What do I do? 

  • Hello and thank you for posting.

    I am sorry you are having problems with symptoms that could be long-term effects of your targeted treatment Imatinib.

    I would recommend you speak to the team who prescribed the Imatinib treatment. They may be aware of others in a similar situation and be able to advise further. Long-term effects from cancer treatments are not unusual and specialist 'late effects' clinics are starting to open up around the country to help support these patients. It might be worth looking to see if there is one local to you, I am aware that University College Hospital in London has one.

    You might find that moving this post to the 'living with cancer' section might mean you hear from others, so you don't feel so alone. 

    There is also a GIST UK charity that might be a support.

    Take care and if you find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9 am till 5 pm, Monday to Friday.

    Sarah.

  • Offline in reply to CRUK Nurse Sarah

    Hi Sarah, 

    Thank you so much for the reassurance and advice. I will contact the oncology team and try and find a late effects clinic. Thank you once again. 

    I would like to post this for others to view but not sure how to.

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