Hello lovely friends on this wonderful supportive site.
I was diagnosed in 2018 with peritoneal cancer. I had 6 lines of pacitaxol/carboplatin then debaulking surgery. I was then in remission for but the cancer returned so had another 4 lines of chemo. I was put on Niraparib but found this very hard to tolerate. This made me feel quite poorly. I started to get stomach and back pains. My CA125 was rising slowly so my consultant sent me for a scan. The scan showed the cancer was progressing again so I am now on 6 lines of chemotherapy. I am responding really well to the chemo. I am having carboplatin/caelyx.
I would like to hear how other ladies on here with peritoneal cancer are getting on.
My cancer is terminal and there is no cure but it’s so reassuring when you hear the lovely people on here going through the same journey.
Stay safe and keep fighting.
Lots of love 💕
Written by
Lesinbeds
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Mine is terminal too. But the way I try to look at it is that life in itself is terminal!!! We just have to keep living as long as is possible, because life is wonderful.
It is good to hear you are so positive and are responding well to your current chemo.
Mine is not peritoneal but they took 12 weeks finding out just what it was because is had spread to all the lymph nodes above my peritoneum which is apparently unusual for ov cancer. They say mine is of tubo-ovarian origin. I had six rounds of carbo/taxol too but my cancer was inoperable.
I have been on Niraparib for four months and feel really well but they are not sure it is working. My C125 is falling slowly but last scan showed a "slight progression". They say it might be because I was late starting on the drug. My original onc did not start me on a parp so by the time I got a second opinion and was put on Niraparib it was 12 weeks after chemo when it should have been within 8 weeks. Any way, fingers crossed for my next scan in three months.
Do so hope you keep having a good response to chemo and have a long and happy remission from this awful disease. Good luck my dear. All best wishes x
I’m glad you are feeling good on the Niraparib. Fingers crossed for your scan in 3 months. I have a scan too in 3 months at the end of treatment so hopefully we’ll catch-up then, both with good news.Take care, and remain positive.
HiInterested to read your reply to cumbrianlass. I do have ovarian cancer that has gone into the omentum peritoneal lymph nodes above that liver and spleen. Took four months to diagnose then four rounds of carboplatin and taxol. Then told in operable. Had four more of same chemo then 18 treatments of avastin. Last October six months after finishing the avastin the cancer started growing again. In January started six chemos of carboplatin and doxil which has reduced and yesterday I started on niraparib so I read with interest comments on this treatment. Good luck.
Hi darling. My C started to grow 6 month after finishing firts line chemo/ But they said to me when its so soon it platinum sensitive and carboplatin cant be given so soon and they giving me now Caelyx looks like on its own not in combination...
Hi, I was diagnosed with PPC in February 2014, I’ve had 2 recurrences and I have been on Niraparib for the past 13 months. Doing okay a few side effects but managing. X
I'm very glad to hear you are responding well to your treatment.Thanks for posting...as you say it really does help to share our experiences. I was diagnosed with PPC in 2019.Had 6 doses of chemo with debulking surgery midway through the course.
I am Brca 2 positive so started Olaparib straight after chemo. I've been on it for 18 months now.
I know my cancer can't be cured and I was in a pretty dark place early on. Gradually I've started to feel more positive and can now look forward and enjoy life again.
This caring, generous group has helped me enormously .
I've tolerated the Olaparib fairly well just having joint pain, fatigue and a few tummy grumbles.
Lately I feel my symptoms have changed and though my Ca125 is steady I'm booked for a scan next week.
I'm obviously fearful this may be my first recurrence but if it is I feel mentally stronger, more knowledgeable and better able to face it now.
Hope you're able to enjoy some of this lovely weather Lesinbeds and all the very best to you.
Hi Jacky, I’m glad you are tolerating the olaparib. I know when I was on Niraparib there was horrible side effects! I didn’t tolerate it very well at all.
I am wondering at the end of my chemo what will be the next step! I asked if I would be put olaparib but my consultant said no because I’m BRCA negative so I’ll just have to wait and see.
I’m glad you are feeling mentally stronger. It helps us so much to get through the treatment. Obviously we all get down days. This always happens to me the week after chemo,I feel absolutely rubbish then but then I start to build myself up again. It’s amazing how we cope and get through it.
It’s a lovely day today. Rather hot though!! I sitting in the garden moving the brolly round so I keep in the shade.
You stay strong and positive, we’ll get through it. Love Lesley 💕x
Hello Lesinbeds. I'm BRCA neg as well, but when they tested my tumors themselves, they were BRCA positive! I was told because of this, I (may) get as much benefit from olaparib as a BRCA positive person, so have been on it for 15 months now. I'm being treated at City of Hope in Pasadena, California. Maybe that's something you could ask your doc about. Olaparib has made me queasy for a long long time, but I do believe it's keeping me alive, so I power through the yuk.
I was diagnosed with ovarian cancer in January 2020 and started 6 cycles of carbo-taxol in March of that year followed by debunking and then two more cycles of chemo which finished in September. I was told I was in remission by the symptoms were back by January, despite the niraparib I was prescribed. A scan showed I have some progression of disease and 'stranding' in the peritoneum. I keep getting neutropenic which has caused two weeks of delay but I have just had my fourth cycle of caelyx-carbo and feel quite rough even though it was a reduced dose. My CA125 has reduced from 151 to 16 which is good news. I am wondering what will happen when I finish this course of chemo because I am BRCA neg. and PARPs don't seem to help me.
Everything you have said is the same as me! Only mine is peritoneal ca.
I have 3 more chemos and wonder what will be next. My consultant said there are lots of alternative, we’ll just have to wait and see.
I seem to tolerate the chemo really well. I have had one blood transfusion and no doubt I’ll have another one before completing all cycles. My CA125 is now 10 and I’ve still got 3 more chemos to which I’m pleased about.
You take care and let me know how you are. It’ll be interesting to see if we follow the same path of treatments.
It was really good to get your message, I’m quite new to this forum and not very good with technical things and now I feel a bit more confident to write replies and posts. I’m still feeling exhausted from chemo on Tuesday but trying to get out and meet up with family and friends. I’ve also been trying to find out how much protection I have against COVID as I’ve read that people who are immunocompromised may not have built up as many antibodies from the jabs as others. So far I’ve got nowhere with this and can’t get an antibody test. I’m confused about how vulnerable I will be when we open up tomorrow. I hope you are doing ok and as you say, it will be good to see how we get on with our treatments. I’m in East Sussex, and I’m 69 by the way.
Hi Kathy, glad you are feeling a little confident. To be honest I can’t see it being much different with the lifting tomorrow.
Im still going to wear my mask in shops and try and keep my distance. I can’t see things ever being like they used to be.
I live in Westoning, Bedfordshire and have my treatment at Mount Vernon Hospital. I’m 61.
My next treatment in Tuesday. I wear the cold cap because I didn’t want to loose my hair. It does mean the treatment takes longer but I thought it was worth it!
Hello I was diagnosed with PPC in September 2020. I seem to have had the same treatment as you. I am on watch and wait now, which is the scary part. I've been told they will contact me in 3mths to see how I am doing.I am incurable and after debulking on 10th June, was told still some residual disease left in various inoperable places, so really I'm just waiting for a recurrence. Also been told no more chemo or nariparib as I am more than 12 weeks since last chemo.
I seem to be coping with the recovery from surgery just discomfort now but is all compounded by having a 2cm kidney stone which they found on a scan in March, which is causing me horrendous pain, and waiting for surgery to have that removed.
I am pretty low at the moment and just waiting for it to start misbehaving again and not knowing when, is driving me mad. I'm trying to stay positive but it's hard 🙁
I can understand why you are feeling low. Especially with the extra pain from your Kidney stone. Hopefully they won’t keep you waiting too long before surgery.Fingers crossed that you won’t get reoccurrence too soon! It’s so hard to get it out of your mind. I find when I’m out and about I stop thinking about thing’s! Mind you with this pandemic it is hard. I find walking out and seeing the fields and countryside makes me feel better. Life is wonderful despite our situation. Stay strong and keep positive. Keep me updated how you are. Love and hugs coming your way from Lesley 💕 x
Don't know if its helps but l don't believe in terminal who knows when there numbers up. [Edited by moderator] . Sorry to quote this yet again ladies but my husband who had pancreatic cancer and was given 3 months to live is still very much alive after nearly 30 years .
He's just amazing and helps me to stay positive.
try and get the right treatment sometimes change doctors if need be. The journey with chemo operations etc. Isn't easy l should know lve also had 3 previous brain surgeries and lived to tell the tale. My motto is never give up if you can we obviously all want quality of life. Keep positive and great your responding so well to the chemo. Love & hugs SheilaF xxx
I only tell it to give people some hope , its very hard being told you've got cancer and its incurable. Just think you have to try a different path if you can get second opinions give treatments that are horrible ago if you can. We cant put a time limit on our lives. Keep fighting stay positive this site brilliant for picking you up when your down everyones been through such alot and its nice to know your not alone. Sending love & hugs to you allSheilaF xxxx
I'm so sorry you are going through this as many of us have. It is unfortunate that the niraparib wasn't working for you. Keep your chin up and your wings strong.
What stage were you when diagnosed? I was diagnosed in 3/2019 with stage 2b HGS PPC. I had surgery to remove tumor and then 6 rounds carbo/ taxol. Going for annual PET scan tomorrow. Hoping for the best for all of us.
I was diagnosed in 2018 with G3 stage4 endometriod Ca (arising from endometriosis). I had a full hysterectomy in 1998 due to endometriosis. From then on I was on HRT. Apparently there was a cell left and over the years my HRT was feeding the cell. I used to get terrible stomach pains and bloating and was being treated for IBS! This was for about 9 years, over this time the cell was growing. When I moved I changed doctors and the GP sent me for a scan. That is when I found out I had the 8cm cancer mass. ‘Thank god I moved’ !!
I’m just so pleased I am being treated and responding well to treatment. I am very positive and looking forward to the future. It’s weird how we are put into these situations and our mind and body copes.
Yes Lynne, previously I was at Houghton Regis Practice, I had been there for over 30 years. When I moved to Westoning they said I had to move practice as I was out of their area. I then moved to Toddington MC. I was only there a couple of months, when the GP referred me for a scan and that was when my journey started!! … I wouldn’t be here today if I hadn’t of moved GP practice .. xx
Aw Lesley, I don’t think I’ve known your whole history until now. Got a bit emosh reading these replies. You really are a complete & utter star. So hope we can meet up soon 🤞🏼
I was diagnosed with perotoneal cancer on March 23rd this year. Had 5 rounds of chemo and awaiting 6th then debulking surgery. I'm coping with chemo quite well so hoping I make a good recovery from the surgery.
Well done on the chemo and I’m sure you’ll be ok after surgery. Just take one day at a time and build yourself up. I had to have another 3 cycles after my debaulking surgery just to mop up. Remain strong and positive that’s half the battle of getting through. I’m sure you’re a tough cookie. Good luck and let me know how you are doing. Lots of love, Lesley x
Mine is Primary Peritoneal stage 4. I was diagnosed in January 2017 and have just finished carboplatin treatment for second recurrence. The only symptom I’ve ever had is ascites which I suppose is not too bad, but it’s scary how it can grow and spread so silently, then becomes unbearable quite suddenly. My second recurrence was a tumour behind my bladder but I was completely unaware. On the plus side I’ve had two decent remissions in this time and so far have been NED at the end of each treatment, had lots of fun and stayed fairly active. I’ve just started taking Niraparib so we’ll see how that goes for me x
Good luck with the Niraparib. I’m not sure what is happening with me when I finish my chemo in September, I’ve just got two more sessions now. I know I’ll be having as scan so I’ll just wait and see from that. Take care and stay safe and positive, I think that’s the key.Love Lesley xx
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