Selpercatinib

Hello Rob,

I understand selpercatinib is also used for treatment of some lung cancers, it might be worth also asking your question on the lung cancer community as there might be someone on there taking it.

Derek.

Will do many thanks derek 

Hi there, 

I am on Selperactinib for MTC - have been on it since mid January 2025 so nearly a year now.  I do not think there are many MTC patients in the UK on this drug.  

Hi Rob

I have been taking Selpercatinib since June 25 so that’s 14 months . I have NSCLC Adenocarcinoma . At diagnosis last March I had a 35 mm tumor in my left bronchi and mets in brain and back. The Selpercatinib started working within a week with my breathing retuning to normal . My first scan at 3 months showed the primary shrunk to 15 mm and at next scan 7mm. Subsequent scans show my cancer as “Stable”. My lifestyle hasn’t changed and I’m a fit 71 year old. Only problem is the side effects of fatigue and reduced libido . My oncologist has recommended taking thyroxin as my T4 and TSH is intermittently out of range . I haven’t tried it yet as I am waiting for a reduced Selpercatinib dose first . I would be interested to hear from anyone else taking this drug and their experience .

rgds

Paul