Access to Trametinib

[cath_koala]

Hello - This maybe a silly question but can I request Trametinib for myMum's LGSC (Fallopian Tube) - even if we had to pay for it ?

[Terrileeloughlin]

Hello, has you mum had debulking surgery?. Which country are you in?. X

[cath_koala in reply to Terrileeloughlin]

Hi - yes my mum has had the full de bulking, opted for no chemo as she has LGSOC - currently she is taking letrozole. Waiting for CT scan but we think there's been a recurrence as her ca124 is rising quickly, now at 250. We are in the UK.

[Terrileeloughlin in reply to cath_koala]

The same with me. I was put on letrozole eighteen months after the debulking because I changed oncologists. When you find out why her CA125 has risen, and the reason why, talk to them about trametinib. If you are not happy with what you are told, get a second opinion. I hope all, is okay with your mum, and that it is only inflammation that is causing the rise. Good luck x

[cath_koala in reply to Terrileeloughlin]

Hello - sorry for late reply. Thank you so much for your advice - and yes hopefully the rise is just an infection or from the vaccinations. Are you on Trametinib now ? I wish you well and hope life ok for you too - big hugs x

[Terrileeloughlin in reply to cath_koala]

Thankyou❤

[koffeekat99]

I think the interim NICE guidelines are still relevant at least until 1 July. So if chemo potentially would have been used then for LGOC trametinib can be used instead. So it depends on whether she would be considered as needing a change in treatment. Which I guess will come down to CT scan results.

If you search for ‘interim NICE ovarian cancer 2020’ you should find the guidelines.

Assuming your mum’s in England?

[cath_koala in reply to koffeekat99]

Hi - thanks for that link - great to have first hand info - yes she is in England x