I was diagnosed March 2025 with NSCLC Adenocarcinoma with RET gene mutation. A 35 mm tumour in my left Bronchi and METs in my back and Brain. I started Selpercatinib and within a week my breathing returned to normal. First scan showed shrinkage to 15mm after 3 months. The Brain Mets were zapped with Stereotactic surgery. The problem with Selpercatinib is the fatigue ,loss of libido , slight skin rash and heightened sensitivity around my lips . I have remained fit and aged 71.
I am in a very small group of people with this condition and therapy , majority of patients appear to be women . No national statistics appear to exist for this treatment and it is early days . I would be very interested to hear from others in this category.
Hello Rickh,
I haven't had this treatment so have no personal experience of it. Hopefully someone here may be able to respond more constructively but in the meantime I don't know if you're aware that Macmillan have an information sheet on it and if you haven't read it a link is below, it might be useful?
I also don't know if you're aware of the Roy Castle Lung Foundation, it has a discussion board hosted by HealthUnlocked and I've also placed a link to this below. An entry there might attract replies and if you haven't done so already it could be worth a try.
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/selpercatinib
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
