Selpercatinib/retevmo treatment for met lung cancer

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Hi all.

I am currently on Selpercatinib for my stage 4 lung cancer. I am looking for anyone else on the same treatment, as I have nowhere to go for questions. Is there a specific support group for this?

I am especially interested in the effect it has on kidneys. My team keep telling me it is damaging my kidneys, so we stop treatment for a week or more then go back on it, then stop again. We have also reduced the dose. I just don't feel that this is helpful to my body, but wondered if anybody else has had a similar experience.

Thank you

chellesimo 8 months ago

Hi Nosilla sorry your treatment sounds rough. I hope the lesser dose helps.

I have done a search of the site for posts about Selpercatinib but haven’t been able to find anything unfortunately. Have you looked at the Roy castle lung cancer site to see if anyone has mentioned it there?

“Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou

Chelle

Jurra 6 months ago

Hello. I started Selpercatinib 360mg/day last February. Within 2 months I was feeling quite ill and was treated at the clnic as a day patient. The blood tests showed liver toxicity, and pills were stopped for 2 weeks; my lower legs had a bad rash also. Restarted pills on 240mg/day. In a few weeks I had a severe neck, upper arms then face inflamation. Am told a reaction to sun exposure. Pills stopped, cortisone pills. Now as my face is better on 80mg a day and avoiding sun before (and After) increasing the dose soon.

Do get in touch if you want to talk.

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Selpercatinib/retevmo treatment for met lung cancer