maintenance treatment, need advices pls!

[JingJingLove]

Dear Lovley ladies, I have just finished my treatment and CT Scan shows NED. I am at Royal Marsden Chelsea, professor Banerjee told me today that since I am both Brac and HRD negative, the parp inhibitors Nirapari will not be beneficial for me. So her advice will be either no drugs or nirapari. I also met Dr Angela George who said slightly different things for me. She said I may benefit from Nirapari. I don’t know what to do now, could anyone please recommend another OC expert for a third Opinion? Any advice or experience from you will be highly appreciated. Thank you

[Newbery3]

Good morning 🤗 You could try Prof Christina Fotopoulou for an opinion. She is my angel! But Prof. Banerjee is very well read and thought of in ovarian cancer fields so I think she has her reasons. Maybe she thinks they are better suited if ever needed again. I'm on them stage 4b and I did 22 avastin but I'm HRD +. Hope this helps X

[JingJingLove in reply to Newbery3]

Thank you so much for your reply.

[Newbery3 in reply to JingJingLove]

You'll make the right decision, just go with your gut 🥰

[candyapplegrey]

Hi JingJing, Do you have clear cell? Prof Banerjee is an expert. I would trust her. xx

[JingJingLove in reply to candyapplegrey]

Hi I am high grade serous not clear cell. Thank you

[SopSinger]

I think you would be wise to trust your doctors. Dr. Banerjee is eminent in her field and very well respected. I didn't have Niraparib or any other PARP inhibitor because they weren't around when I was treated, and I've been NED for 18 years.

[JingJingLove in reply to SopSinger]

Many congratulations! Well done! You are doing so well! Any advices to share? Thank you very much for your reply.

[Bookclublover]

So I’m HGSOC S3C, Brac and HRD negative. Like all other women in my situation in Scotland, we are given Niraparib if negative for gene mutations and Olaparib for women with positive genes. My understanding is that parps are better for women with the mutation but that they may also benefit some negative women too. Who knows? I’m NED / been on Niraparib for 7 months and my CA125 is climbing slowly. I know women on Nir who have relapsed at 8 months post treatment and also a couple of women with S4 who are 6 and 11 years respectively- parps not available then. Many of us Scottish women had private surgery with Christina Fotopoulou because the wait times in Scotland are unacceptable. She would be great for a second opinion and also Professor Jayston? at the Christie in Manchester- he’s one of the leading UK oncologists.

[JingJingLove in reply to Bookclublover]

Thank you so much for your reply and your valuable information. I wish I am on ovacome earlier and can do surgery with pro Christina Fotopoulou. I am actually going to see her next week for a second opinion. I appreciate with your reply. How was your side affects bearable?

[Bookclublover in reply to JingJingLove]

I’m in a group of 8 OC women locally and on a Scottish FB OC page- 150 of us. Many of us are or have been on Niraparib. We typically start on 2 100mg tablets/ day. I know of a few women who reduced dose to 1 tab because of side effects and a couple who stopped taking it altogether because of side effects. The vast majority of us have tolerated it well. Raised BP is a common side effect- I’m on one Amlodipine and this controls it well. Other side effects- nausea, insomnia, dry eyes- diminished quickly. Initially I was incredibly anxious about taking Niraparib, now I’m anxious that it won’t work. We are kept on it for as long as it’s working.

Say Hi to Christina from Liz in Scotland- she keeps tabs on us all!

[JingJingLove in reply to Bookclublover]

Dear Liz, thank you so much for your reply. How long you have been taken this medicine? Do you think it works on stop the recurrence?My professor Banerjee told me it doesn’t work much, only a little, in months not years. I am so jealous that you are in group, having support from each other, it is much easier if you have a group. It is ok to be nervous, I don’t really want to take nirapari if it doesn’t work but I am also nervous if I don’t have maintenance treatment. Xx

[Bookclublover in reply to JingJingLove]

7 months.

As someone else said, you need to decide what’s best for you- nobody can advise how your disease will progress in the future.

I guess you are being supported by this lovely group of very experienced women. You can also search for Niraparib side effects on this site and you’ll learn more about how others find the drug.

You could also contact Target Ovarian Cancer or Ovacome for a chat.

Good luck with your decision ❤️.

[JingJingLove in reply to Bookclublover]

Thank you very much for your reply. Good luck with your recovery!