What next? re maintenance for HGS recurrence - My Ovacome

My Ovacome

18,248 members20,377 posts

What next? re maintenance for HGS recurrence

Towergirl profile image
5 Replies

Would love to know if any ladies who has also been unsuccessful with Olaparib, what has been a successful maintenance for you?

I’ve just got 2 cycles more of Carbo/Caelyx, min scan showed slight reduction not as good as hoped for.

Only maintenance mentioned by oncologist is to go on Letrozole.

I’ve asked my oncologist about any possible trial , so far none has been mentioned and I can’t find one, though I’m willing to go to Christie’s. I’m also BRACA 2.

Worried that I get the right maintenance in place otherwise I’ll be back on Chemotherapy again after another six months of growth!

hoping for inspiration from you lovely ladies

Written by
Towergirl profile image
Towergirl
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Lyndy profile image
Lyndy

Hi Towergirl

When Olaparib stopped working for me I went on a trial at the Marsden of Celerasertib which was taken alongside Olaparib and made it work more effectively.

Sadly, although it did the job,

I got such bad side effects I had to stop it.

That was more than a year ago but there were several trials at that point trying a similar thing. Have a look at the Target Ovarian Cancer site which has a search facility for trials.

You are right that there’s no obvious route for maintenance after you have had your turn on a Parp inhibitor. If your oncologist can’t suggest anything you can ask for a second opinion from the Christie because they are likely to have all the up to date knowledge on any possible options xx

Towergirl profile image
Towergirl in reply toLyndy

Hi Lyndy ,

Thank you for replying and information given.

I have looked on line re trials but couldn’t find anything open at this moment. Maybe I’m not very good at following links but my oncologist says the same. Not mentioned PaRP taken with another drug! Need to ask.

After chemotherapy for recurrence it is beginning to seam as if, which drug to try but not sure which will work! I know we’re all different but the route seems the same.

Hopefully we both get to receive maintenance that works for us. Best wishes.

Carpediem68 profile image
Carpediem68

Hi Towergirl

Have you already had Avastin? I’m not sure if it’s available for recurrence but that is the only maintenance I know of other than parps and hormone therapy.

Good luck x

Towergirl profile image
Towergirl in reply toCarpediem68

Hi Carpediem68,

Thank you for replying.

NHS England doesn’t allow Avastin for recurrence, though I’m thinking about going private for a few cycles if I can’t get on a suitable trial. Otherwise it will be hormone treatment.

Sending you best wishes.

Lolsy profile image
Lolsy

Hi Towergirl,

I am interested in the answers given to your question as I’m in a similar position to you but I was on Niraparib which stopped working for me after a year.

A month ago I finished 6 cycles of Carbo/Caelyx and was told by consultant before this chemo started that the only maintenance program she would be able to offer me would be hormone therapy.

I had an appointment with consultant this week for results of CT Scan that I had a couple of weeks ago, nodules have shrunk but not as much as hoped for and there aren’t any new ones but she said that they are going to discuss my scan at their meeting next week to decide if an operation is needed, not what I really wanted to hear and another week of waiting and worrying.

Take care x

Not what you're looking for?

You may also like...

Caelyx as a maintenance treatment.

Hi Lovely ladies, So far my treatment of Caelyx and Carbo is going well, 2 more to go. My...

Tamoxifen maintenance for 0V cancer

Hi Ladies, Stage 3 OV Not posted before ,but you ladies have helped me come to terms with a...
Pauline14 profile image

Doing good! Hormonal maintenance next...

Hi ladies! It's a pretty sunny day here in Holland. Nicely chilling outside and on my last cycle...
Droomfles profile image

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

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

Next steps on recurrence

Hello Ladies, I hope you are all feeling as well as you can be. Can I ask for a bit of advice?...

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.