Newly dignosed Peritoneal Cancer

Hey, Sorry to hear, I am in the same boat since yesterday where my mom was diagnosed with peritoneal carcinometasis. She was a healthy 59 year old but out of nowhere had a massive swelling of abdomen last week (ascites). Doctors drained about 4 litres of fluid, did all scans and tests and said very unlikely she will be a candidate for surgery since it has spread extensively and chemo would be the way. We are anxiously waiting for next steps, would you mind sharing your experience?.. Good luck and Stay strong! 

Hello, I was diagnosed with PPC IIIC 01/26/2020.  They removed 6 litres of ascites, and I needed chemo (PICC line) before surgery could be performed because of the many tumors. After 3 or 4 chemo sessions, I had the hysterectomy, omentum removed, and other debulking. More chemo, and "done" 08/22/2020. I have been on Zejula since that time. I go for regular check ups, and now monthly blood draws. My last bloodwork was last Saturday, 10/23/2021.  I received a call from Gyno/Oncol on Monday 10/25/2021 that my CA 125 is doubling. I have a P.E.T. scan this Monday 11/1/2021. I am scared. I fear the PPC has returned. I see the Dr. on 11/19 and I guess I will learn then what can be done to treat this, if anything.  I wish you all the best.

Hello Willow Oaks,

I am sorry to hear about your diagnosis. Hang in there. Thank you for writing, as I feel there are so few of us, like we won a crap lottery. I am not familiar with Avastin, so I looked it up, interesting, and I hope that works for you. I was progression free for 14 months after the first treatment and surgery, and my Dr. said that was average. The goal is to have as much progression free time in between reoccurrence.

So, I started chemo in January, 2022, because my PPC cancer metastasized to my lymph nodes in various locations, and I am still undergoing chemo, because PET scan at end of April, 2022 still had 2 large tumors that did not go away. I will likely "finish" Chemo on August 5, 2022. Then have a PET scan to see if all tumors have gone away. I am to remain on the immunotherapy drug Mvasi every 3 weeks for as long as that works, I guess.

I have been on Doxil (which has caused "hand and foot" syndrome, Carboplatin, and Mvasi (an immunotherapy). I have the 3 drugs at day 1, and Mvasi on Day 15 (which is one cycle). I have started "round 7", and go for Mvasi this Friday 07/08/2022. It has been rough, a long haul. Much constipation, heat sensitivity, exhaustion. I think our survival rates are based on how much you can handle, and for how long. I have monthly blood draws, and bi-monthly urine tests to make sure my body is tolerating these drugs. Recently, I noticed my CA 125 went up a tick, still well below 35, but still. I did not lose my hair with this chemo regimen.

Did you have any surgery? Are you stage 3? May I ask your age? Have you had hair loss? Any other symptoms? I am now 54. Please stay in touch. I wish you all the best. I am in Los Angeles. I have been receiving excellent treatment at Kaiser Permanente. Please share any details you feel comfortable sharing. Thanks, Diana

Hi Diana! Just know checking this site. I just finished my 6 SOC Chemo with Avastin. Had some good response accounts to CT scan and CA125. Scan showed reduced tumors and ascites by 3rd treatment and 50-60% more down from that by the final treatment. I am not NED.

My CA125 went from 1700+ by the time I took two months to decide what to do and get started with treatments down to 8.2 by 6th treatment. I am on Avastin another 12 months as long as it works without progression or bad side affects. She also added Femara a estrogen blocker since the biopsy showed the tumors to be estrogen positive. I also take 500mg of Metformin. My PCP won’t give me more as he says my A1C is in a good range under 7. Takecontrol58 & others sent to think 2000 mg of Metformin helps reach or retain remission & NED. I still eat regular food but more carefully. Moderation so far and some days more strictly careful on diet. Need to add exercise as a habit change I need to make. I’m 70. I was diagnosed with high grade uterine serous carcinoma Stage 1A on Jan 15th 2020. Declared NED after complete hysterectomy surgery. Recommended 6 SOC Chemo treatments & 2 high dose vaginal radiation treatments…just to make sure Nothing spreads because uterine serous carcinoma is sneaky like ovarian cancer. I reoccurred in my peritoneal area about a year & a half after hysterectomy. I do try to do modern intermittent fasting most days eating between 10am-5-6pm. I also try to not nibble but to have two-three meals & 1-2 snacks rather than any ongoing nibbling that would keep sugar and insulin spikes up. My local oncologist is a bit depressing to me as she does want to be honest and not have me let my guard down I guess. She is what I call hopeful for NED or “cure” but not really optimistic either. She seems excited to how well I responded so far to the latest treatments. I sure feel better. But she follows with “so long as it doesn’t comeback in 6-9 months…which leaves me feeling like “Well that’s a bummer”. I am trying to keep my attitude up…sometimes hard to do. I sometimes wonder if I foolish to ignore planning to actively plan for my end…sell everything. Settle any debts etc. just in case suddenly I find myself feeling too I’ll to deal with any of that. It’s hard to deal with that need to at least write things people need to know and account numbers and passwords written and updated so folks at least know who to call. My husband died suddenly and I can’t retrieve our treasured travels pics and memories so far.

Told my kids if I suddenly kick the bucket just call an auctioneer & realtor that will get rid of everything for a percentage and be done with things like that. I need to declutter for my own peace of living for the next few decades too though. But gee …holding that new 5 month granddaughter, teaching reading & playing with my 7 year old one & trips that are 6 hours each direction to see my daughter family and to check on my 98 year old Dad that live in opposite directions seem to get priority over decluttering my living space. I also keep 13 pond birds, three dogs and two cats and a pretty little lake that’s so nice to sit by and do absolute nothing.

Please keep me updated with your new developments or hopefully continued NED.

Willowoaks

Hello PPURDIN, How are you? Any updates on your treatments or remission? All best wishes, Diana

Hope you are doing good.. She had three rounds of chemo, surgery where they removed about fifteen lymph nodes, ovaries, uterus etc and then finished with three more rounds of chemo (all but first one with avastin).. The whole process lasted about six months.. When we went for a review after last round of chemo doctor was puzzled about mild ascites remaining with some plural effusion.. Did a PET scan and ascites fluid cytology again but didn't find any malignancy.. She is currently under monitoring, apparently recurrence rate for this type of cancer is quite high and have to check CA125 every three months.. She is better than during the treatment phase but still a long way from being normal.. How are you doing?

How is everyone doing? I have primary peritoneal carcinoma as well, stage IIIc when diagnosed. I have had debulking surgery and am undergoing chemo (carbomand abraxane). I do not have the BRAC gene and have high-grade serous carcinoma. Out of curiosity, are there any long-term survivors out there?