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[Ab59]

Hi, I was diagnosed with Primary Peritoneal Cancer stage 4b Sept 2020 my Ca125 was 1640. I also had 2 drains for fluid in the abdomen. After 3 rounds of carboTaxol I responded well enough for debulking surgery on Xmas eve. This was successful and in Feb 2021 my scan showed NED, was then put on a maintenance drug Bevacizumab and will have my last one on the 16th Feb 2022. I'm also non BRAC. I'm feeling a little anxious now as not sure if it is the bevacizumab keeping the cancer from returning. Was told not curable, but can be treated and that PPC is treated the same as Ovarian Cancer. I have been taking comfort and hope from all you ladies and your stories. I don't see any posts from anyone who has PPC. Maybe my story will help someone just starting out on this journey.

[candyapplegrey]

Thanks for sharing such a positive story! It's good to hear. I have OC which recurred a year later. I'm interested in the maintenance drug too. Can I ask if you're in London? Hope you stay well. x

[Ab59 in reply to candyapplegrey]

Hi candyapplegrey I'm in LeedsHope you are well too x

[Lovedogs41 in reply to Ab59]

The maintenance drug mentioned is Avastin x

[organicinna in reply to candyapplegrey]

hello Candy/ Are they not gave you Niraparib or other maintenance drugs before its recurred ? xx

[candyapplegrey in reply to organicinna]

no. i wasn't offered anything like that. don't know whether it's bec i have clear cell/endometrioid. i did ask about the niraparib and was told i wouldn't get it. haven't asked re avastin. wasn't told these cancers were 80% likely to recur either. wasn't even booked in for a scan till i self-referred myself with symptoms. well i have to call re covid vaccine anyway. thanks to all. back i go to my diy cancer care. xx

[Tillymint61 in reply to candyapplegrey]

Avastin is just another name for the drug you are already receiving.. x

[candyapplegrey in reply to Tillymint61]

but i'm not on a drug at all. had surgery, chemo, recurrence, surgery, radiotherapy.

[Tillymint61 in reply to candyapplegrey]

Sorry that is a reply to the original post. The maintenance drug they reference is also called Avastin. In UK Avastin is part of the standard treatment for PPC .

[Esmerelda101]

Hiya, I was diagnosed PPC 2019, stage 3c. I’ve found that as the disease and treatment regimes are the same it’s very rarely distinguished as anything other than OC. I’m on 2nd recurrence and due to start Avastin alongside weekly Abraxane/Taxol but all going well. Good news to hear you are NED, although recurrence is always a possibility it’s not 100% guaranteed, lots of hugs from York xx

[Ab59 in reply to Esmerelda101]

Hi Esmerelda101Thank you for your reply, I'm sorry you are having to have more treatment for occurrence. I was told I'm not curable but can be managed so I do expect to get a recurrence, but hopefully not for a long time. I'm due to finish treatment next week and then have a scan so fingers crossed everything will be fine. Hope everything goes well in your treatment.

Big hugs back from Leeds x

[Jayniiee]

Hi Ab, that's great news that you are NED. i have stage 4b (was told 3c before op). I had debulking surgery 19th jan 2022 after 5 rounds of chemo and due to start having another 3 rounds of chemo in the next few weeks. At diagnosis the cns said it was curable to me. They can't know it will definitely come back. I've seen lots of posts from ladies with ppc on here who have been diagnosed years ago and it hasn't recurred. I intend to live my life as if it isn't going to. Hope you can do that too, as far as possible. I know, it's hard, isn't it. Sending you a massive hug and positive vibes xx

[Ab59 in reply to Jayniiee]

Hi JayniieeHope you are recovering well from your debulking op, I try to stay as positive as I can, but do have my moments as I'm sure all us ladies do. I'm thankful for every day that I have, and hope for many more.

Sending you hugs xx

[NewtonEmma1900]

Hi ab and ladies. I have been reading posts for the past few weeks but had not posted or replied. I am grateful to have discovered this site as I was feeling quite alone! I too was diagnosed with peritoneal cancer but was at stage 3c in late September 2021 - no symptoms until the onset of ascites and pain that went with it. I too have had two drains and so far have had 4 rounds of chemo. My ca125 has come down from well over a thousand to 128 and I am booked for debulking surgery ( with Christina Fotopoulou in two weeks time and then more chemo). I too have been told no cure but plenty of treatment and I just intend to get on with life the best I can but I just keep worrying about damage to the bowel and a possible stoma.Katy

[MPee123 in reply to NewtonEmma1900]

Hi good luck with your op x Christina did my op last September- she really doesn’t like stoma’s (her words) so she’ll do all she can to prevent you having one ❤️

[NewtonEmma1900 in reply to MPee123]

Thank you, I was really happy to meet Christina she inspired me to remain optimistic; your reply about her attitude to stoma’s has made me feel better.

[nettiebobs in reply to MPee123]

Can I ask are you based near London or were you referred to Christina? We have got a referral in at the moment with her for my sister. She has just had a reoccurrence after 4 months. Had a stent in her stomach just over a week ago but to be honest isn’t doing great. Cannot fault where she is at the moment but you just need to know don’t you if there’s anything else.

[MPee123 in reply to nettiebobs]

I’m in Wales x I found Christina from recommendations on this and other sites x To be honest my op was in Sept and my ca125 is rising again, but the pet scan is clear at the moment x so I’m not really sure what’s happening with me to be honest 🥰

[nettiebobs in reply to MPee123]

So are you still under Christina’s team? So do you travel to London for all your scans etc? I assume you were with her right from the diagnosis. Did you have all your chemotherapy in London?

[MPee123 in reply to nettiebobs]

No all of my other treatments were in Cardiff x I just went to Christina for surgery and I will have follow ups with her every 6 months (I’ll pay for these check ups) x my scans are done in Cardiff too xxx

[nettiebobs in reply to MPee123]

Thanks. I was told it would be a ‘shared care’ but didn’t really know how it would work. I wish she had seen Christina last year, my sister may not have had the stoma. It really isn’t working for her. I’m hopeful ‘new eyes’ as they say may bring new hope.

[MPee123 in reply to nettiebobs]

Good luck 🙏🏻❤️🙏🏻

[MPee123]

You’re in the best hands possible ❤️ Praying for a great result for you 🙏🏻

[NewtonEmma1900 in reply to MPee123]

Can I just ask how long was your stay in hospital? The paperwork says 5 to 7 days but I am assuming that is dependant on the outcome of the surgery and general fitness? It will be my first ‘big operation’. Thank you.

[MPee123 in reply to NewtonEmma1900]

I was in for 5 nights - the night before and four nights after x

[Cher96]

Thank you Ab59. I needed to hear your story. I’m having a second opinion on Thursday. Hopefully they can find out why I’m not responding to drugs. Feeling ok though so onward I go.

[Jacky5]

Hi Ab59I'm glad to hear you've done so well with the treatment.

I have PPC too and understand it to be the same as having ovarian cancer. I was diagnosed in 2019. Like you I had 3 lots of chemo before debulking.

I was found to be Brca positive and finished a 2 year maintenance course at the end of December. So far so good and I'm just waiting for the results of my latest scan .

Things seem to have changed so much just in the time I've had this disease and I think we have good reason to feel positive for the future .

Ive my fingers crossed and hope you get great news from the scan and sending you a big hug from just down the road in Sheffield. 🤗

Liz xxx

[Hidden]

I have PPC diagnosed October 2016, hgs 3c. Doing well and currently in remission x

[Ab59 in reply to Hidden]

That's fantastic, hope you stay in remission for many years to come. This gives me real hope x

[KeepMoving2]

Hi ladies from the US - happy to find this thread. My route more circuitous - I was diagnosed with metastatic breast cancer in 2019 after we realized my cancer had spread to my skin. My double mastectomy was my debulking but there was many lymph nodes and their is nothing that can be done with it in my skin. Verzenio (abemaciclib) and Arimidex (anastrozole) put me in remission until it came back with a vengeance in May/June 2021. Started developing ascites and my CA 27.29 bumped up to 58. New meds Everolimus and Fulvestrant didn't work and decided to do my CA 125 which jumped from 8 to 704. We did 3 paracentesis (the last was over 11 lbs) , confirming that my fluid was breast cancer which had 'morphed' from original genetic makeup back in 2019. PET scans show cancer in my peritoneum and Omentum, and stomach. Very little info out there on breast cancer, ascites, etc. We pivoted ASAP to 20 rounds of weekly taxol, and Avastin and Fulvestrant which are continuing now as my maintenance drugs. 2nd and 3rd opinions didn't like my combo of drugs for MBC - especially Avastin - but Moffitt docs said they had great experience with Ascites and cancer that occurs in that region. Both tumor markers are back to normal. I am back to doing lots of things - some side effects that I am working hard on. They are clear that I will be living with my cancer like a chronic condition. So I exercise a ton and eat really clean. Good luck to all - best to not worry about when the next shoe will drop but rather be my best self when it does.

[couls]

Hi, I was diagnosed with PPC stage 3C in February 2014. Had two recurrence’s, still here and doing okay. X