anyone on a uk trial for 2nd line relapse maintenance?

[Towergirl]

hello this is my first post though I have been given hope by reading other ladies brave stories.

My journey started in 2017 age 69 . My OC is HGS. After debunk op and 6 cycles of Chemo, all was good until last Octobers CT scan showed relapse to Spleen and Liver, stage 4a.

In December surgery was offered (I’m BRAC2) debunk 10 hours complex operation. I refused and now half way through 6 cycles of Carbo/taxol which is reducing cancer and I might not need an operation.

My oncologist states that I cannot have Avastin (asked after reading on posts here). as only for 1st line maintenance. I had nothing offered when I was first treated or now.

I will be going on Olaparib but looking for any trial or study that might be of benefit. I’m an hour away from Christie’s Manchester.

I’m not great on internet research 🧐

This is my first blog and post 😘

[Lyndy2]

Hello Towergirl, I am on a trial at the Marsden which is Olaparib plus another drug to make it more effective. Started Olaparib after first recurrence in May 21 but by Oct 22 it became clear it was only partially working.

I would ask for a second opinion at The Christie if that’s your nearest centre of excellence. As a BRCA 2 carrier, you should be getting access to treatments developed for us hereditary patients.

Also, I am not sure your oncologist is right about Avastin. There are protocols that use it after first line.

What with the surgery option and the Parp inhibitor option, I think an opinion from a real expert on your particular circumstances would be a good place to start and they will know about trials you might be eligible for as well (I went to Marsden for radiotherapy but ended up on a drug trial because they recommended it).

Good luck xx

[Towergirl in reply to Lyndy2]

thank you for replying I really need to be more assertive. Good luck xx

[Trickysite]

just to say I had a 10 hour keyhole operation at 75 for stage 4b during which Ihad a Gynaecology and gastrology surgeon both operating and they took out so many organs, I could not count! Recovered well and am doing well on olaparib. Now 77. If more info wanted, let me know. Emma x

[Towergirl in reply to Trickysite]

thank you so pleased you’re doing well. My offer wasn’t keyhole and I would loss my spleen. I know people live without spleen but worried about future infections.

The chemo has greatly reduced liver cancer hoping spleen can be saved after 6 cycles end.

All information is good to know before meeting oncologist again. Thanks again x

[Trickysite]

I did not lose my spleen so don’t know about the pros and cons of that. I had to fight fir keyhole as UCLH London surgeon could not do that but I found a surgeon in Royal Surrey County Guildford doing it as a trial for oC surgery.keyhole was brilliant. Good luck with everything.eEmma x