Primary Peritoneal Cancer

[Hockeymom52]

I was diagnosed with PPC stage III C in April of 2023. After consulting with onocologist and gynecologist/oncologist it was decided to do 3 rounds of chemotherapy then debulking surgery followed by 3 more rounds of chemo. After first 3 rounds I had a very positive response with major shrinkage of tumor. Had surgery in July then more chemo through November. Was then put on 100mg of Zejula which I tolerated very well. My CA125 was 10 for a few months then started creeping up in the normal range. My last test showed CA125 at 79. Had a CT scan which showed NED. My oncologist wants to watch trend then if it continues to rise rescan. Want to see if anyone else has gone through this as I am sick with worry. Please share your experiences with me as I need to hear some hope.

Marietta

[A1r1t]

Hi hockeymom52, my original diagnosis was cancer in my ovaries grade 3 the cancer was also on the outside of my stomach and my peritoneal that was back in 2020 October. I had the usual chemo carbopentin/carbotaxol then debunking then chemo plus avastatin then I was put on Tamoxifen which worked until September 2023 then I had a reoccurrenc so back on chemo carbopentin/cylax think I've spelt it wrong, not sure. Now the cancer is just in my peritoneal area and I'm on Rubraca tablets 2 taken twice a day, my CA125 number was in the 100s now it's about 87 so coming down nicely I've found the Rubraca OK, not too many side affects but everyone is different. I'm feeling very lucky at the moment ☺. I haven't heard of the drug your taking but I know some times the same drugs are known by different names in different countries. Any way just wanted to wish you luck and I hope you have a good experience with your treatment, hope everything goes well for you. My very best wishes, from Ivy xxx.

[Hockeymom52 in reply to A1r1t]

Thank you so much. My best to you!

[Lizchips in reply to A1r1t]

IP, isn't a drug, it's interperiteneal chemotherapy it means a port was put into my abdomen attached to my ribcage the Drs put chemo in it also then you get rotated both sides head up head down. To slosh all the chemotherapy throughout my abdomen around everything not removed. I did normal IV chemo too. Paxitaxol and cysplatin and carboplatin. I was diagnosed stage 3c clear cell cancer. In 2014, April. I just reached 10 yrs with no reoccurrence.

[Alice77]

Hi. I was diagnosed with PPC early in 2021 and following 6 cycles of Carboplatin and Paclitaxel had radical cytoreduction surgery then two more cycles of the chemotherapy. I was taking Niraparib from April 2022 and by the following April my CA 125 had started to increase again. After surgery it was 15 but by summer 2023 it was over 1000. My oncologist was fairly pessimistic about using the PARP inhibitor and predicted that it would stop working effectively after a few months but I wanted to try it and persisted despite quite severe side effects for well over a year. By August 2023 I was back on conventional chemo with a CA125 over 6000. Caelyx and Carbo brought it down a lot until I became Carbo allergic and resistant by the fourth month and had to continue with just Caelyx. My CA125 is up in the thousands again and so I am hoping to start weekly Taxol soon. Some people seem able to maintain good health and keep the cancer at bay for years with Niraparib but it seems many of us are less fortunate, particularly without a genetic mutation. Your CA125 is still at a manageable level and there are lots of alternatives open to you if necessary so it is important to keep optimistic. I really believe it makes a positive difference. Best wishes.

[Hockeymom52 in reply to Alice77]

Thank you!

[Tealgirl7]

Hi I am a long-term Survivor of stage 4. I was diagnosed18 years ago.. I have never been disease-free and my CA 125 has probably been over 200 for most of that time. Right now I am taking the parp inhibitor and avastin has been added to it. My levels still jump around but my team puts most value in the results of the CT scan.. you can do it. Everyone is different and reacts differently to the medication. Wishing you the best.

[Hockeymom52 in reply to Tealgirl7]

Thank you so much for the encouragement. I am hoping I can try Avastin again as when I had it once while on chemo and it raised my blood pressure very high.

[Bookclublover]

Hi, trust the CT scan and try not to worry. I have a friend - we both have HGSOC- whose CA125 starting going up by a third every month from December. It’s now 300, but Jan and May scans clear. It’s hard, but try to stay positive. ❤️

[Hockeymom52 in reply to Bookclublover]

Thanks for the encouragement!

[Naimish]

Hi... CA 125 is a number BUT importantly it's the Imaging thats also important to understand metastatis levels if any. Excessive chemo just on CA 125 levels only adds to overall weakness of the body. There are successful trials that now tell you the treatment forward based on bio.markers from blood tests. You may check with the oncologist for details . Keep the Faith

[Lizchips]

Why so little chemo I did 18 rounds in 14 weeks. IP and IV chemotherapy. I'd ask your Dr.

[Naimish in reply to Lizchips]

18 rounds IP and IV in 14 weeks ?

[Lizchips in reply to Naimish]

Yes I told my female Dr I wanted what she would want if she was in my shoes. I'm in the USA, I was diagnosed stage 3c clear cell ovarian cancer. In April 1014, I've been cancer free 10 yrs with no reoccurrence. IP chemotherapy isn't comfortable and you have to be a candidate. I was lucky, my ca125 has been a 7.

[Hockeymom52 in reply to Lizchips]

18 rounds of chemo sounds a little excessive to me. Are you sure all infusions were carbo/taxol or was it just Avastin?

[Lizchips in reply to Hockeymom52]

I have been on nothing.

[Lizchips in reply to Hockeymom52]

No I've been cancer free 10 yrs. My CA has been a 7. I was diagnosed at 51 yrs I'm 61.