Hi everyone. I was hoping I could ask for some information. I am supporting my Mum (76) who was diagnosed with primary peritoneal cancer almost two years ago, initially thought was stage 3c and as it had affected a lymph node it was then upgraded to stage 4. She was treated with Paclitaxel and carboplatin, her CA125 dropped from over 800 to 16 and her tumours reduced to point of being barely visible. She was given Avastin as maintenance. About 9 months post treatment the CA markers started to rise and the cancer became active again, she was in good health generally and has just finished her 6 sessions with the same chemo. At the mid point review her oncologist was happy with the progress, CA dropping to almost normal range and tumours shrinking. She has her oncologist meeting later today and she is particularly worried that, as she has had Avastin before, that there will be nothing they can do now to try and keep the cancer at bay. I wondered if anyone had similar experiences and examples of other treatment options that have been succesful so I can keep her positive?
Many Thanks
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SupportingmyMum
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I am so sorry for you and your Mum. I hope you get positive news here. At the moment I am on Avastin, and hoping for no reoccurrence for a while. Would be very interested in peoples answers. Best wishes xx
Just thought I would add an update. My Mum's oncologist appointment has just finished and they were really pleased with the results. Mum's CA125 is just above normal at 36, but oncologist said she considered this a normal result effectively. The scan shows that most of the tumours are now barely visible with one area slightly visible but shrinking well. Mum has been placed on Niraparib as a targeted treatment which they hope will hold the cancer back. If anyone has any experiences to share about this drug I would really welcome these.
I’m sorry you and your mum are having to go through this. The uncertainty of what can be done with treatment is emotionally challenging, as one size unfortunately doesn’t fit all.
I never achieved NED following 6 rounds Chemo . Tumour also deemed inoperable. CA125 reduced from 9000 to 1000. Although going down it is still very high.
I started recently on Avastin every 3 weeks and taking Olaparib daily. Time will tell.
I do hope that there is treatment out there suitable for your Mum . 🙏🏻🙏🏻 xxx
Hi I was diagnosed with primary peritoneal cancer in 2017 had 3 sessions of chemo and had good response and went to Oxford and had surgery they took out everything gynaecological and even did a peritonectomy omentectomy and even took my appendix. I then had 3 more sessions of chemo followed by avastin. Had to have a bit more chemo last year but had good response and am now on nirapabid. No side effects yet and last three scans were stable. Just wondering why you mum didn’t have surgery ? Best wishes to you both and I am hope the nirpabid will work for her.
Hi, thanks for taking the time to reply. It sounds like you have been through a lot but so good to read that your situation is stable. Mum was told that surgery wasnt an option because of the location of a deposit, she was told it was too risky as so close to one of her organs and, as Mum's hadn't spread to any, they didn't want to risk spread from the procedure which they said was possible.
Thankfully she seems to respond very well to chemo, which we are really greatful for. Its really encouraging to hear that your experience with Niraparib is positive so far, thanks so much for sharing 😊
Look into clinical trials. The more chemo she has had, the more limited her options. Trials are not last resort. Clearity Foundation in the USA will look at her genetics and tell her what trials she is eligible for. They may be international in their scopr. I assume you have had her genetics done . If you haven’t had her folate receptor alpha status done,, do it. If she’s eligible, it may help.
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