Thyroid cancer spread to my lymph nodes and lungs and liver - anyone else on Retsevmo?

Hi there, 

I was diagnosed back in 2022, had a partial thyroidectomy and also lymph nodes removed, then after 6 months went onto Cabozantinib. I was on this for 19 months (with bad side effects - lost 1/3rd my weight!) then I was moved to Retsevmo / Selpercatinib.  Been on that for over a year now, much better side effects wise - in fact I feel pretty well normal! A concern initially because my ALT levels shot up suggesting liver damage, but this is a known potential false positive, so I had a brief pause and then back on the Retsevmo and they just monitored, and the levels gradually dropped again.

So I would say side effects are fine, and from the scans it is keeping me stable, plus my calcitonin levels have significantly dropped. 

I hope that helps. 

Thank you that sounds very positive. All the best going forward. 

I’ve not heard of that. I have spread also to Lungs and poss liver. Neck stable for now. Had 30 treatments of radiotherapy to neck and radio iodine after op in 2024. Having more radioiodine July 2026 for lungs. Would be interested to know more about Retsevmo- is this some form of chemotherapy or immunotherapy. Has it stabilised cancer? Are you able to lead a ‘normal’ life? Any info would be appreciated as radioiodine not worked before and if not working this time may be tried on some other drugs. They’ve mentioned TKI Tyrosine Kinase inhibitors. Is Retsevmo part of this sort of treatment? Great to know it’s working for you!