Which is best?

[Di16]

I wonder if anyone with GCT (granulosa cell tumour) would mind saying which treatment has worked best for them so far. For me, Exemestane has been the best of the hormone treatments I have tried, (have tried Arimidex, Tamoxifen & Zoladex too). In chemo, I've had Carboplatin, weekly Taxol, & Caelyx, & none have been very successful. Has anyone had anything else? Di

[Seasun36-uk]

I’m sorry Di, I have no experience of this. Just wanted to wish you well xx ❣️

[Howick01]

My friend with GCT had surgery only with a good outcome.

Hope you find a solution soon.

Take care x

[Madmarilyn]

Hello Di,

We've spoken before. I'm on my way to visit a new consultant in London tomorrow, to find out what he plans for me, as the surgery isn't working seemingly, & my local consultant feels I'm outside his skill base!

I had pains out of the blue & full hysterectomy to remove two cysts on ovaries in Feb last year, when they did the biopsy in March they diagnosed GCT & said I'd be OK, just had to have 3 monthly bloods to check.

Sept 2017 they showed it was back as my Inhibin levels shot up and doubled every six weeks while they scanned me Oct & Jan to find out where the b£gger had come back. Thus Feb they went I need via laparoscopy & found more than in scan, around bladder, on surface of colon, vagina etc, so now am being referred. Thinking immunotherapy but not sure what there is out there, so will report back. Thanks for the names your end, will let you know from mine!

Remind me where roughly you are & what age, if you don't mind me asking? I'm in the SW and just 54.

[Di16 in reply to Madmarilyn]

I'm in Suffolk, & aged 68 (was 58 when first diagnosed) Di

[Orsolini]

Hi Di - sorry to reply so late. I have had everything you have had except Tamoxifen for low grade OC. Can't help with your question but interested to know what you decide to do next. All best Nicola

[Madmarilyn]

Hello Di,

I'm now on Anastrozole, I'm sure you know it's also known as Arimidex, which you mentioned, following my visit to the London specialist. Here's hoping.

There are apparently various immunotherapies under trial, too, as I asked about things I'd read about like Nivolumab, and he seems to be quite influential in trying to get new drugs on the NHS once he's had funding for trials via charities etc.

Do you mind saying which hospital you are treated at? Maybe by PM if you don't mind?

How are you now? I am sorry we're both in the same club, but maybe we can compare notes & help educate our doctors?!