Endometrial adenocarcinoma and peritoneal NEC

Posted by rikka @rikka, Apr 14 12:33am

Anyone with stage 4b endometrial adenocarcinoma with metastasis to the peritoneum (neuroendocrine adenocarcinoma) with lymphadenopathy?

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Just had my doctors appointment and I was told my options are very limited at this time. I am wondering how to get an appointment/ second opinion at other Hospitals like MD anderson? Currently getting treatment at BJC healthcare under Washington University doctors at St. Louis

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Also wondering how to get a 2nd opinion at MD anderson or Mayo clinic in Arizona. I tried searching but there is no in-network doctors for my insurance

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Profile picture for rikka @rikka

After 3rd cycle of chemo (taxol and carbo), i did a PET scan and doctor said it wasnt safe to do surgery and tumor wasnt responding to chemo.. had 4th cycle of chemo last 4/7/26 and they added immunotherapy (keytruda)..

Ca125 was 800+ upon diagnosis in January 2026.. went down to 240 after 1st chemo then down to 148 after 2nd chemo... but after the 3rd chemo it went up to 1358.

Also getting thoracentesis and paracentesis every few weeks.

Hoping immunotherapy will help.

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@rikka
Hi Rikki,
As I understand it, CA 125 increases (or any cancer antigen) increases after treatment is indicative of "shedding" of cancer cells into the blood stream, caused by the treatment. That's normal.

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Profile picture for cookercooker @cookercooker

@rikka
Hi Rikki,
As I understand it, CA 125 increases (or any cancer antigen) increases after treatment is indicative of "shedding" of cancer cells into the blood stream, caused by the treatment. That's normal.

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@cookercooker i hope thats what it is. I was told by my gyn onco that i have not been responding to treatment. I still opted to continue 5th cycle chemo and 2nd cycle of keytruda while looking for other options

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have you a CT scan yet? I've been on Enhertu for 20 cycles, which covers more than a year of 3-week infusions. Although around cycle 13 the CT scans showed NED, my ca 19-9 kept rising and I couldn't get a satisfactory answer so I asked Dr. Google. I read medical reports, not blogs. And this is what they call shedding of cancer from your tumor. My recent blood test showed that the ca 19-9 had declined to normal levels, finally!
So, keep at the treatment.

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Profile picture for cookercooker @cookercooker

have you a CT scan yet? I've been on Enhertu for 20 cycles, which covers more than a year of 3-week infusions. Although around cycle 13 the CT scans showed NED, my ca 19-9 kept rising and I couldn't get a satisfactory answer so I asked Dr. Google. I read medical reports, not blogs. And this is what they call shedding of cancer from your tumor. My recent blood test showed that the ca 19-9 had declined to normal levels, finally!
So, keep at the treatment.

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@cookercooker yes had ct scan upon diagnosis and pet scan around 2 months after. Tumor is the same size and I also feel that it has not shrunk at all. Also have maligant ascites from the neuroendocrine peritoneal carcinoma.

I really want to give immunotherapy a chance since im still on 2nd cycle for keytruda. Planning to get covid booster next week when side effects of chemo has calmed down

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My gyn onco suggested to stop carboplatin/taxol chemo and keytruda.. and suggested to try carboplatin and etoposide combination.. but she said it was up to us to decide if we wanted that or to continue the current regimen (carbo/taxol + keytruda) and we chose to continue for now.. im really not sure what to do.. any thoughtd about doing carboplatin and etoposide instead of the original treatment regimen?

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Profile picture for rikka @rikka

@cookercooker i hope thats what it is. I was told by my gyn onco that i have not been responding to treatment. I still opted to continue 5th cycle chemo and 2nd cycle of keytruda while looking for other options

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@rikka sounds right…sometimes the benefits don’t show up as soon as we hope…meanwhile, check out the other options… my own response to immunotherapy took time and then totally zapped the cancer to NED.

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Profile picture for rikka @rikka

Had 1st immunotherapy (keytruda) last April 7 together with 4th chemo (taxol and carboplatin). Repeat Ca125 went up to 1400+ from 1300+.. prior to 1300+ it was down to 140.
Will be having 2nd immunotherapy and 5th chemo tomorrow.
I feel like the tumor is the same size. They do not want to do surgery yet. 🙁

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@rikka could be that the tumor hasn’t seemed to shrink, but is it getting softer, a positive indicator ?

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Profile picture for rikka @rikka

@cookercooker yes had ct scan upon diagnosis and pet scan around 2 months after. Tumor is the same size and I also feel that it has not shrunk at all. Also have maligant ascites from the neuroendocrine peritoneal carcinoma.

I really want to give immunotherapy a chance since im still on 2nd cycle for keytruda. Planning to get covid booster next week when side effects of chemo has calmed down

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@rikka good idea;)

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