Primary Peritoneal Cancer : I was diagnosed with... - My Ovacome

My Ovacome

18,248 members20,377 posts

Primary Peritoneal Cancer

Hockeymom52 profile image
16 Replies

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

Written by
Hockeymom52 profile image
Hockeymom52
To view profiles and participate in discussions please or .
Read more about...
16 Replies
A1r1t profile image
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 profile image
Hockeymom52 in reply toA1r1t

Thank you so much. My best to you!

Lizchips profile image
Lizchips in reply toA1r1t

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 profile image
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 profile image
Hockeymom52 in reply toAlice77

Thank you!

Tealgirl7 profile image
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 profile image
Hockeymom52 in reply toTealgirl7

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 profile image
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 profile image
Hockeymom52 in reply toBookclublover

Thanks for the encouragement!

Naimish profile image
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 profile image
Lizchips

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

Naimish profile image
Naimish in reply toLizchips

18 rounds IP and IV in 14 weeks ?

Lizchips profile image
Lizchips in reply toNaimish

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 profile image
Hockeymom52 in reply toLizchips

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

Lizchips profile image
Lizchips in reply toHockeymom52

I have been on nothing.

Lizchips profile image
Lizchips in reply toHockeymom52

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

Not what you're looking for?

You may also like...

Primary peritoneal cancer

I was just diagnosed with this type of cancer, primary peritoneal cancer, which I am told by gyn...
Gvaadt profile image

peritoneal cancer

Hello I am looking for some advise please. Two years ago my mum was diagnosed with peritoneal...
Aliollie profile image

Primary Peritoneal Cancer diagnosis

Hi. Anybody out there with PPC ??? Just wondering what chemo drugs your Dr. has used for you? I...
LisaYankee profile image

Primary peritoneal cancer

Hi Was diagnosed with ppc stage 4 in May. No symptoms whatsoever. Admitted with bowel obstruction....
Chamber profile image

Primary Peritoneal cancer

This is actually my first post because it has finally dawned on me that although I have been...
IrishMollyO profile image

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.