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The targetted drug Everolimus (Afinitor),

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Hi, Just about to embark on Everolimus and have no idea what to expect, have notes on side effects, but no real idea of what to expect. Do the side effects go on for how long? How much quality of life? Is this the last throw of the dice? What's the best (and worst) outcome after using this therapy? Many thanks in advance.

Lorraine - Macmillan

Hi biscuits74,

Thanks for getting in touch and welcome to the online community. It’s natural to have lots of questions about how a treatment may affect you.

Everolimus is used to manage small bowel neuroendocrine tumours that have come back after treatment.

Everyone is different as to how they tolerate the drug. As with all drugs there can be an accumulation of side-effects the more treatment you have. Your team will guide you on ways of managing these, so you can have a decent quality of life to carry on doing the things you enjoy.

Clinical trials have shown that everolimus can improve overall survival by 6-8 months. This does not mean you will only live for that period of time. It depends on how you respond to the everolimus with the effect of the drug keeping the tumours from growing or spreading. In the same trial they commented that health-related quality of life was maintained during everolimus treatment.

The NET Patient Foundation has a Patients Stories section, this may be helpful to join and post your story as well as hear from others.

If you want to speak to one of the nurses then just give us a call on the Macmillan Support Line.

Best wishes and take care

Lorraine-Macmillan Information Nurse Specialist