Out of the Loop

[ZenaJ]

Good morning all, I hope you are all as well as you can possible be.

It's been 7 years since I had my op and chemo and there are new things talked about that are beyond me as I don't think they were offered at the time. e.g. Olaparib and other things. What are they and why are they used? If anyone has a few minutes to go through a few of the things on offer these days it would make my understanding of some of the posts easier.

Many thanks in advance. Zena xx

[Lyndy]

Hello ZenaJ

Lovely to hear from you! I hope you are keeping well.

The ‘aparibs’ olaparib, niraparip and Rucaparib are PARP inhibitors which were developed first of all for braca gene carriers and which interrupt the copying of mutant ( cancer ) cells... now also being used for non braca carriers as they can perform the same job for some. I will be offered Rucaparib when I complete second line chemo as a maintenance therapy. Hope that helps and that you will update further on your progress when you can xx

[ZenaJ in reply to Lyndy]

Thanks Lyndy, that does help. I am a BRCA carrier but I was never offered any of these. Perhaps it wasn't available 7 years ago. I've been very lucky up to now. I'm due for a CA125 in the next couple of weeks so fingers crossed, as usual, that everything is still okay.

Hope all is well with you. Love Zena xx

[Mumsie13]

Good morning. Glad to hear you have been doing so well. It's great when someone takes an interest in the ongoing treatment and maintenance of this dreadful disease - it makes us feel we are not forgotten. Glad you asked the question. I am halfway through treatment for first recurrence and have been meaning to do some research into the 'aparibs' and hormone therapy for if/when I need it. It depends what my rather rare cancer decides what it is going to do. Thanks for the reminder I have been procrastinating a bit. Lovely to hear from someone new. Take good care of yourself. x

[ZenaJ in reply to Mumsie13]

Thanks mumsie, I look at the posts every day but am usually unable to help anyone as I know nothing about the new treatments.

I sometimes feel so sad for ladies that are not doing so well that I think of leaving the site but I can't bring myself to do it because occasionally I can give someone some hope.

I worry about everyone and am sorry you have a recurrence. it's good to know there is treatment now as when I first started looking it seemed that if it returned that was the end. There are new devlopments all the time, thank goodness.

I wish you all the very best and thanks for your reply.

Best wishes, Zena xx

[Mumsie13 in reply to ZenaJ]

You're welcome. I think we have quite a few ladies on here who have been in remission or on maintenance for years. I think it depends what type of OC you have, some types are more treatable/maintainable than others. One could say that that is the unfairness if it all but there is always hope. Yes people who come through this always bring hope and comfort. Don't ever feel you have to leave - you are entitled. After all you've been there, done that and ripped up the T shirt. Bless you. 🤗Jackie x.

[ZenaJ in reply to Mumsie13]

Thanks Jackie, xxx

[Hidden]

Hello Zena - lovely to hear from you. I tried a PARP for maintenance after my first recurrence but sadly it did not work for me, I think they are more successful if you have a BRCA mutation, but it sounds as if you don't need one, well done you, what is your secret?

[ZenaJ in reply to Hidden]

Thanks Lyn for your reply,

I wish I knew because I'd pass it on to everyone.

I'm sorry it didn't work for you and hope you are doing well even so.

Best wishes,

Zena x

[Ruebacelle]

olaparib is a parp inhibitor and is esp good if you are braca positive. There is also avastin a monoclonal antibody that is used alone or in combo very effective. You can check out various medical sites also

[ZenaJ in reply to Ruebacelle]

Thanks for you reply. I think the parp inhibitors must be too late for me every though I carry the BRCA gene. I've been so lucky even without them.

Wish you the best. xx

[Ruebacelle in reply to ZenaJ]

well i think you should take a look at them as they are now seen as effective if you have brca. best of luck, and hugs

[ZenaJ in reply to Ruebacelle]

Thank you x

[SUE7777]

Thanks for posting and letting us know about your survival, we need these stories to give us a positive outlook. Take care Sue xx

[ZenaJ in reply to SUE7777]

Thanks Sue, I post occasionally but there's not much I can add these days because I'm not on any of these medications I can't give any advice.

I hope you are keeping well. Zena xx

[OvacomeSupport Partner My Ovacome Team]

Hello ZenaJ

Thank you for your post. As well as the helpful replies that you've had from other members, you can find information in our booklet on targeted therapies at ovacome.org.uk/targeted-the...

Please get in touch with our Support Service on 07503 682 311 or at [e-mail] if you have any questions or if there's anything that we can help with.

Best wishes

Julia (Ovacome Support Services Officer)

[ZenaJ in reply to OvacomeSupport]

Thanks very much Julia. I'll take a look. Some of the messages on here are like reading shorthand to me and I sometimes think my experience was completely different to everyone elses even though I know it really wasn't.

Thanks again, Zena x