HRD negative- Homologous Recombination deficiency

[Narna1]

What maintenance drugs are best if I am HRD negative?

I am under the impression that the PARP inhibitors are best if you have tested positive for HRD.

I had a negative result for this so I am wondering if this is good or bad and if the PARP drugs will work for me.

I am going to ask my oncologist but I wondered if anyone else knows about this.

Thanks Allison

[delia2]

Hi. It is true they work best for HRD positive or BRCA positive people but maybe they’ll try it anyway. You don’t say your type and stage of OC. They may save it for the future. You really need to talk it over with your team. Have they mentioned Avastin? If they were going to use that they would start it with the last couple of chemo treatments. You could call Ovacom or look at their resources. Xx

[meadowgirl]

Hi. I am HRD positive and been told that I will be put on to PARP inhibitors when I have finished my chemo. I have had interval debulking surgery 3b. You can look up NICE guidance to see what is recommended, but I also understand that health trusts interpret the guidance differently. If you don’t want to wait to see your oncologist, you could try phoning your Clinical Nurse Specialist, who will probably know what the policy is in your health Trust. Wishing you all the best on your journey.

[Morini]

I am BRACA negative and still awaiting HRD results but assumed HRD negative unless proved otherwise. I have started Avastin for maintenance, I had 2 sessions with post debulking op chemo and I am off for my 3rd Avastin on its own today. I am experiencing very few side effects.

[organicinna]

Hi . Yes Am negative to and Niraparib they prescribed me after 2st line chemo didn't worked. I recurred after 5- 6 month , i think even earlier than that. Now am on Caelyx chemo once a month for 6 month/ But I had a CT scan yesterday to see if its working after 3 rounds or not. But don despair try it anyway because we all different. ))) All the best xx

[AlwaysSmiling47]

Hi Alison, I am brca and hrd negative and started Niraparib parp inhibitor two months ago after second line chemo. I was first diagnosed over 7 years ago. I don't know as yet whether it's working , but my oncologist felt it was worth trying. A friend who was only diagnosed in September has also started Niraparib after first line treatment. She is also brca and hrd negative. Xx

[SUE7777]

It is true that the results are best for BRACA and HRD positive patients but there are people out there that have had parps and they have worked, this is a fairly new drug and so it is definitely worth a try if you can get it. Hope this helps Sue xx

[Summergold2]

Hi Allison, I am Braca neg and HRD Negative! Diagnosed Dec 2019 Surgery immediately (within one week) Stage 3 c HGS Carbo Taxol initially with the addition of Avastin.......considered NED after Chemo and continued AVASTIN until May 2020......I knew the dragon was back in Jan of 2020 but my CT scan Negative. CA 125 continued to rise to 64 ....... I am very CA 125 sensitive as diagnosed only at 57. Got Pet SCAN middle of May and got the bad news first of June it was back. Miffed at doctors not listening to me but Chemo of Doxil/Carbo started for 6 months every 4 weeks. Another CT scan after 3 sessions to make sure it was working considered at that time NED......YES! Oh after first 2 sessions CA 125 was at 27. Finished out the next 3 sessions and was put on Olaparib 600mg starting Jan 2021. A few side affects initially but so far very doable. Ca 125 is hovering at 12

So there are tools that the oncologist has in their wheelhouse. This is an amazing site for information and what has worked for other TEAL LADIES. But REMBER THIS we are all different we don't always fit the treatment that protocol sets out. Keep asking questions and never ever give up there will be something that will work for your unique self!

TEAL LADIES STAY STRONG

Debbie in Calif. USA

[thejoannabell]

I'm HRD- and BRCA-. Diagnosed March 2020, recurred January 2021. I started Niraparib (zejula) after second-line chemo. I have one tiny nodule that is of concern, and it shrunk at first and now is remaining stable. I started out on 300mg, but the side effects were intolerable. I am now on 100mg daily + Avastin every 3 weeks. Last week my onc said I can start having scans every 6 months now instead of every 3 months. They will likely put you on niraparib-I hope that it works well for you. I had every side effect on the list at first, but I think that's unusual. With the dose reduction the side effects are totally manageable.

[Pianoplayer731021]

Hi, I am negative also. I have been on Niraparib for two years in July of this year. My CA 125 has remained pretty steady at 13 or 14.9. I believe they might keep me on this until July or maybe one more year. I was diagnosed at stage 4 after my debulking surgery. You just don’t know for sure if this drug kept cancer cells at bay or I would have been fine without it. I believe that I did the right thing by trying this parp like my dr. suggested. Hope all goes well with you, Donna U.S. xx

[Narna1]

Thanks to all the amazing women who have replied with their experiences regarding maintenance drugs. I am 3c, 5 chemos and debulking done. 1 more treatment to go then PARPs. Hopefully it will work xx

[pretzel8]

Hi Narna, I am a relative to an OC stage 3c, not a direct experience myself, but from the more recent trials of Niraparib for frontline maintenance, the benefit was most appreciable for HRD positive folks, but the trials were not able to really predict the effect with HRD negative (due to numbers enrolled and considering the complexities of who were optimally surgically debulked and who weren't). The side effects can be managed and it is worth a punt as it likely has some benefit, and might have more benefit in some than others etc. Logically, its a good shot and an offer worth taking.

[Rosebine2]

My hospital doesnt seem to test for HRD never been mentioned

[Narna1]

Perhaps you could ask your oncologist about it. When they mentioned it to me I didn’t know what he was on about so I did some research. Still not too sure how important it is. It is to do with whether DNA repairs itself.

[Kayadiana]

Hi Meadowgirl. I also tested HRD negative, but my oncologist was willing to give me a Parp inhibitor, based, I think, on my good response to first round chemo ( Carboplatin/Paclitaxel) and having normal Ca125 after treatment for more than 6 months. I think it’s a bit of a judgment call, as there isn’t long-term clinical experience with HRD negative women. They’ll probably explain that Parps are more likely to work if you have BRCA genes, but that doesn’t mean that they won’t work for anyone else - we’re not all the same. I decided against taking them, but there others on the forum on them

[Narna1 in reply to Kayadiana]

Thanks for your response regarding the PARPs. Do you mind saying why you decided not to take them.Thanks, Narna

[Kayadiana in reply to Narna1]

Hi Narna1It wasn’t an easy decision, but I’d read about side effects, including gut disturbance and sleep problems, and they were dispiriting, especially as I was starting to feel so much better. Also, being HRD negative, they were less likely to work.

I had had unexpectedly good results with chemo (the evident cancer, which, at stage 3, had been in multiple locations within my abdomen, had ‘melted away’, according to my surgeon when he phoned my husband after the op). I put this down to the supplements I took + fasting during chemo (I didn’t tell my very conventional medical team). I’ve done a lot of reading since - mostly quite recent research papers, and there’s a lot of evidence to support turmeric, berberine etc. There are even some well-known hospitals suggesting that administering eg turmeric with chemo could improve the outcome.

So I decided to continue to take supplements and not to add a relatively new drug into the mix. My situation may be quite different from yours, though, so you may well go the other way. As far as I can see, the way that Parp inhibitors work may be very powerful vs ovarian cancer, which, as we all know, is a b. to treat: however they are relatively new, and there is the possibility that, just like conventional chemo, they increase the population or resistance of stem cells/side population cells (there is some research on this). If I do need to take them in the future I will certainly combine them with natural supplements - see the recent very helpful article on the canceractive.com website

Best of luck xx

[OvacomeSupport Partner My Ovacome Team]

Hi everyone

Thank you all for sharing your experiences.

For those of you who are interested in learning more about targeted therapies such as PARP inhibitors, I hope you will find our information resource on this topic helpful: ovacome.org.uk/targeted-the...

Ovacome also hosted a webinar with Dr Rowan Miller (consultant Medical Oncologist specialising in gynae-oncology and early phase clinical trials) last year, who explained more about HRD and it's impact on ovarian cancer treatment: youtube.com/watch?v=dcNRNU6...(Not working as expected?)

In addition, we always advise talking to your clinical team about any supplements you are taking. This is because these can interact with prescription drugs and can cause contraindications. For example, in lab experiments, turmeric was shown to decrease the efficacy of some chemotherapies. Memorial Sloan Kettering Cancer Centre have a database with lots of information about many herbs, botanicals and supplements which can be found here: mskcc.org/cancer-care/diagn...

Please don’t hesitate to contact us if you would like to talk through anything, or if there’s any information or support we can provide. You can reply to us directly through this forum, email us via [e-mail] or call us on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Annie

Ovacome support