Where to from here?

[CorNut5]

Hrd negative test so what exactly is next if no Parp inhibitors are available to me. Early stages of monitoring with weekly blood tests and going to see the surgeon for a checkup in a couple of months. Worried about return of the ovarian cancer.

[MXCD]

Hi CorNut5,

My wife has stage ivb HGSOC, diagnosed in June last year and negative both for HRD and BRCA mutations.

Following the standard debulking and six cycles of carboplatin+taxol, there was no evidence of disease on CT scans but her CA125 remained high at 69.

Under NHS England protocols she was then put on the niraparib parp inhibitor. I think they'd have used olaparib had she been HRD+/BRCA+.

Parp eligibility might be different in Australia but worth asking about niraparib under medicare / insurance.

Best wishes for a very long remission xx

[CorNut5 in reply to MXCD]

Thanks so much for your good wishes and information. I am well supported by my family and have faith in my oncologist

I had the same regime as your wife except after 4 cycles I developed nuropeenia and was in intensive care for a week which left me with fluid at the bottom of one of my lungs but not enough to drain off. Then 2 cycles of carboplatin only because of the pnumonia

I will find out when we visit my surgical oncologist the results of the PET scan which will be late May as my appointment is early June. Weekly blood tests will give some indication when I visit my GP next week. After surgery my CA125 came down to 56 as prior to surgery it was 7000 but before that it was low. Nobody knows why it jumped up so high and I did not know it was high until the surgeon told me after the surgery. I will investigate niraparib I feel well and try not to worry too much. I am glad to have found this forum . Wishing you and your family health and happiness.

[SopSinger in reply to CorNut5]

56 after surgery is not outrageously high and may be just that your body was still recovering after surgery. Any inflammation can cause CA125 to rise. If scans are clear, then trust them and try not to worry. If you spend your life worrying about recurrence, you won't have time to enjoy life, so try to put it to the back of your mind. My oncologist told me that if a new symptom appeared and persisted for two weeks, get it checked out, otherwise not to worry. I'm still here 19 years on and have never had a recurrence.

[CorNut5 in reply to SopSinger]

Many Thanks for your positive advice and yes I will try to get on with enjoying life without worrying. The frustration is attempting to do the same things I did before and becoming tired after 1/2 hour. Maybe I should close my eyes to house work. I am happy for you never having had any more issues long may that continue.

[Alentejo]

Hello, Avastin (bevacizumab)might also be an option for maintenance treatment. I've had it following first line treatment. It is given for 18 cycles in the UK. I also only have Avastin and Niraparib as maintenance treatment options in the UK at the moment. I am HRProficient and BRCA negative.

[delia2]

Hi. Niraparib is your best bet but it has to be started within a narrow timeframe after chemo, maybe eight weeks waiting til early June might rule it out. Similarly Avastin has to be started within chemo. I chose no maintenance after frontline, wanting time to recover, but I recurred in 8 months. I’m somatic BRCA positive but we didn’t know that in 2018. I regret not having had Olaparib then because it might have cured me. I did well on it after first recurrence. You can look up the trial results for HRD negative people on the Niraparib website.

[Bookclublover]

Hi, I’m on Niraparib which is the Parp routinely given the BRACA and HRD negative women in the UK. I’m thinking it’s possible that parps are not used in maintenance for gene negative women in Australia? Worth checking out.

I’ve read a few papers recently advocating against its use with BRACA/ HRD in the US and I think it’s possibly not used in the US as maintenance for recurrence patients who have not previously been on a Parp.

Wishing you well with your forthcoming check up ❤️

[CorNut5 in reply to Bookclublover]

Thank you I am happy to learn about others progress with this cancer as it's been reasonably difficult to talk or find others who have had it I am somewhat isolated as we live on an acreage out of town with no near neighbours . And from what I understand parps are seldom used foe gene negative women in Australia