PATIENT EXPERIENCE OF RET FUSION POSITIVE TREATMENT

[RoyCastleHelpline]

Selpercatinib (Retsevmo®) will shortly be assessed by the Scottish Medicines Consortium (SMC) for use in NHS Scotland, as a single treatment, taken orally, for those with the RET fusion positive NSCLC.

We have been invited to provide a Patient Group Submission for this medicine, and are therefore trying to gather some patient experience quotes in support for this proposed treatment; it would be helpful to know the following:

What has been your experience with the current treatment for RET fusion positive lung cancer?

What impact would taking oral medication designed to target the RET fusion positive mutation have on your quality of life?

Have you taken Selpercatinib and what has been your experience of this?

If you are happy to comment, please get in touch, no personal details are needed, but discussing it with you will help us put together the document on behalf of patients.

Please either comment below, private message or email [e-mail], alternatively, you can phone the Roy Castle Ask the Nurse service on 0800 358 7200

You do not have to live in Scotland to comment, so please do get in touch.

Thank you in advance

The Roy Castle Support Team

[Bow-19]

I know there are different biomarker support groups. RET is on here twice

This is the list please let me know if you can’t read it

[Bow-19 in reply to Bow-19]

It’s actually on 3 times, they might have people who have experience

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Bow-19]

Hi Bow-19

Thank you for the kind reply and providing the list of group mutation support and contact details. If anyone is looking at these, the RET positive groups are based in America and may have different licensed treatments than the UK.

It is very much appreciated and having a patient experience quote is invaluable in support of new treatments for rare mutations.

Kind regards

The Roy Castle Support Team