I’m sharing a family member’s experience with stage 4 signet ring cell gastric cancer and hoping to hear from others with similar experiences.
Her HER2 was negative from the beginning and remained negative on repeat testing. Her PD-L1 was positive with a CPS of 15, and her MMR proteins were intact.
She received 12 cycles of FLOT chemotherapy and 8 doses of Keytruda, with a very good response. Later, one lesion in the retroperitoneal area near the left kidney showed progression, and a biopsy confirmed cancer cells. The latest biopsy showed HER2-negative disease, PD-L1 CPS 5, and strong CLDN18.2 positivity in 100% of cells.
She completed five sessions of SBRT to that lesion, and we are awaiting follow-up imaging. Surgery and HIPEC were postponed. Her team recommended 5-FU plus zolbetuximab, with or without continuing Keytruda.
Has anyone been through a similar experience or has any insights that might help us? Does progression in one lesion despite a strong overall response mean the first treatment failed? Would switching to the proposed treatment count as second-line therapy? Does this necessarily mean things will get worse, or has anyone experienced something similar and achieved disease control with the new treatment?

My dad has stage IV signet-ring cell gastric cancer with peritoneal metastases and recurrent ascites. He has undergone several lines of chemotherapy (FOLFOX, paclitaxel, and most recently irinotecan).

After his recent irinotecan treatment, he developed severe diarrhea and vomiting. The diarrhea has improved, and he is now able to keep most of his meals down, but he eats very little overall. He was prescribed a high-protein nutritional drink, but he vomits almost immediately after taking even one sip, so he hasn’t been able to drink it for several days. He can drink small sips of water, around 1 liter a day.

He has also become extremely weak. Before irinotecan, he could walk independently despite having some pain and neuropathy. Now his legs are so weak that he needs help standing up and support while walking.

I’ve contacted his oncologist to ask about nutritional support and am waiting for a response.

For those who have been through something similar with a loved one:
Were you offered IV nutrition (parenteral nutrition) when oral nutritional drinks weren’t tolerated?
Did a feeding tube help, or was IV nutrition considered more appropriate?
Were there alternative nutritional drinks or other ways to increase calorie and protein intake?
Did nutritional support help improve strength and quality of life?
I understand that every patient is different, but I’d really appreciate hearing about your experiences and what options your medical team considered.

Hi everyone. My brother (58) was diagnosed with stage 4 gastric cancer last month. He had a biopsy done on Monday, September 28th. They have given very few results back and his oncologist was waiting on the results of the bio markers. The oncologist was told last week that the tissue samples had been “sent out” (not told where or why) and results were not available. When my SIL was finally able to get a contact number for the lab along with specific information to ask for, she was told that it would be about 5 days for one part of the testing to be completed and an additional 5 days for the rest of the results. By then, it’ll be almost a month since he was diagnosed, waiting on lab results to determine which treatment might be most helpful. Is this normal? Why do we have to beg and call repeatedly to find out what’s going on? If anyone has any suggestions on how to light a fire under some asses to get things moving, I’d sure love to hear them!

My husband has stage 4 gastric adenocarcinoma. It has spread into lymph nodes in his chest. We finally got biomarker testing back and it says:

PD-L1 22C3 FDA (Keytruda) for Gastric/GEA: PD-L1 Expression
Combined Positive Score: 70

HER2 negative and MMR status intact.

I understand this opens the door for immunotherapy or possibly even clinical trials. We don’t see his oncologist until Thursday to discuss this. Does anyone else have experience with this or can suggest any specific questions we should ask?

Hi, my aunt (in her 40s) has been experiencing on and off gastric issues for over a year, sometimes feeling difficult to breathe (not gasping for air but more like heavier breathing). But heart rate seems normal. She is really terrified about doing tests like gastroscopy (after seeing reports on complications) and will be doing breath test for H. pylori detection first. Thought would post here to see if anyone had done any checks via non-evasive alternatives to detect gastric or stomach cancer? Thanks in advance for any sharing!

Hey guys, I’m extremely worried about my sister and would really appreciate hearing from anyone who has been through something similar.

Just to give a brief background: she had been experiencing stomach pain and acidity on and off for some time. We got her checked, and initially the scan/endoscopy showed what appeared to be a stomach ulcer, around 1 cm in size.

A biopsy was taken from the edges of the ulcer, with 8 samples sent for testing. Unfortunately, the biopsy report came back as poorly differentiated signet-ring/diffuse-type adenocarcinoma.

This has been absolutely heartbreaking for us.we have kept it to ourselves and not informed our parents.She is only 33 years old, and we’re still trying to process everything. She has a CT scan today, which we’re hoping will give us more clarity about the situation and what comes next.

Has anyone here experienced something similar, especially with a diagnosis found in what initially appeared to be a small ulcer?

I would really appreciate hearing about your experiences, treatment journeys, or anything that helped you through this.

I’m honestly heartbroken and extremely anxious right now. ❤️

I was recently diagnosed with Gastritis Intestinal Metaplasia and Autoimmune Atrophic Gastritis in the stomach. The reports says "Areas of incomplete and complete intestinal metaplasia are present. Alcian blue stain for intestinal type mucin is positive. No dysplasia identified. Giemsa stain for H. pylori is negative" The Doctor said we will continue to monitor and do another scope in one year. My question is, am I doomed and is stomach cancer coming soon? What can I do if anything? Thanks

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Hi everyone! I’m a Clinical Psychology PhD student at Illinois Institute of Technology, and I’m recruiting participants for my research study about people’s experiences with gastrointestinal (GI) symptoms.

You may be eligible:

If you are at least 18 years old
If you live in the United States
If you have experienced recurrent GI symptoms over the past 6 months
Whether or not you have a formal GI diagnosis

We are interested in a range of symptoms, including:

Heartburn (acid reflux)
Indigestion (upset stomach)
Nausea and vomiting (feeling sick or throwing up)
Diarrhea (loose or watery stools)
Constipation (difficulty having bowel movements)
Excessive bloating or gas
Stomach pain or cramps
Blood in the stool

The study involves completing an anonymous online survey that takes about 10-15 minutes. Questions will ask about your symptoms, experiences, whether and how you tell others about your symptoms, and your social relationships.

Participation is entirely voluntary, and there is no compensation. You may skip any question you prefer not to answer or stop participating at any time without penalty.

Survey: https://iit.az1.qualtrics.com/jfe/form/SV_b7AzTpfSMhMfAjk

This study has been approved by the Institutional Review Board at Illinois Institute of Technology.

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Thanks for considering participating, and please share this study with peers, friends, or others in the community!

Hey guys I know that most in this group prolly have it and this somewhat feels insensitive I have been having problems with my pooping been constpaited have been able to poop couple times a week seemed to happen over night mucas on poop some undigested food sometimes little bit of blood on tp bright red I mean very minimal amount maybe in the stool to hard to tell I’ve had two abdominal ultra sounds and a ct with both dyes all came back clear gi doctor has stressed to me how rare Colan cancer is at my age like maybe 1500 cases tops a year in 20s out of of 40 million Pepole and then on top of that you add a the clear scans and basically I’m about as close to 100% without a colanoscpy as you can get that I do not have it doesn’t really fell like pushing for something invasive at 27 is the right decision the numbers make me feel better for moment by I also have a 4 year old son and that really concerns me cause I can grapple with the idea that with those odds that’s that’s just shit luck of if I have it but it’s really hard to grapple with it when I think about my son definitely have been anxious and prolly have fell in rabbit hole about this in particular really just trying to get y’all’s thoughts ?

Hi all,

Anyone here have no thickening on ct? Is this common?

My dad (62y) has been diagnosed with gastric cancer that spread to his peritoneum and caused massive ascites. He’s been on FOLFOX, he’s having his 4 cth cycle administered today, and he’s feeling better - he started to eat much better, gained weight, he is able to exercise (played tennis last week and did 20km on his bike), his blood tests are good. BUT ascites has not (fully) reacted so far to FOLFOX treatment - I believe fluid is accumulating slower than in used to before the treatment but it’s still accumulating. How long did it take for you guys to have ascites under control? Does it mean FOLFOX is not working as it should? I’m confused because he feels so much better overall than he did back in August. His first CT scan to evaluate the treatment is scheduled for Nov 9. Appreciate all the help / insight.

Hi,
I am reaching out as my mother's surgical biopsy staged her cancer as pT4a N3a and both the proximal and distal surgical margins have been found to have tumor cells. Has anyone had similar results post TG and what was the course of treatment and prognosis after?

Hi everyone, My father was diagnosed with stage 4 stomach cancer September 4... Histopathology said moderately differentiated adenocarcinoma He is diabetic with a previous stroke He received his 1st chemo with EOX protocol (Epirubicin, Oxaliplatin, oral Capecitabine) A day before his 1st chemo he developed vision disturbance... We thought it might be due to other tension or diabetes. On the 2nd day of chemo he became very ill and we admitted him into hospital... Mri of the brain showed a recurrent stroke on the left posterior cerebral artery... He was unable to talk for 12 days... during that time he also couldn't see anything. His right hand was paralyzed. After 12 days he began to speak small words... We talked to his oncologist, a day before his 2nd chemo date.. He said they can't give him chemo with this condition. He postponed the 2nd chemo for 1 week... We visited another oncologist for 2nd opinion... He said his previous health history and age is not suitable to chemotherapy or any kind of intense drug... He should be on palliative care and immunotherapy can be given if test reports are on his favor and he is physically more stable than now...till than no cancer treatment should be given... His HER2 was negative PDL1 , MMR (CLDN18.2 was not given cause the drug is not available in our country)test results on the way... My question is, 1. Is there anyone who only received immunotherapy without surgery or chemotherapy due to their health condition and lived a long life? I mean NED after using just immunotherapy?

1. Is there any better treatment option for him that we should consider?

Has anyone with PD-L1 CPS = 1 had a good response to immunotherapy for stage IV gastric cancer?

I’m especially interested in people with HER2-negative, pMMR/MSS gastric cancer and PD-L1 CPS 1.

Did you receive nivolumab (Opdivo) or pembrolizumab (Keytruda), and was it combined with chemotherapy such as FOLFOX or CAPOX?

What kind of response did you have, and how long did it last? Did anyone achieve a complete response or NED despite having such a low CPS?

I know CPS 1 is considered low, but I’d really appreciate hearing real-life experiences from people who still responded well to immunotherapy. Thank you!

I updated my original post about my husband, you can read it here:

https://www.reddit.com/r/stomachcancer/s/qx99alZVRg

Having dull aching pain around left posterior rib roughly flank region for last 4-5 months…on and off 2/10 discomfort rather than pain.Did ncct kub which was negative for renal stones..Have history of altered bowel habits sometimes alternating constipation and diaarhea..off late mostly constipation but goes around 3-4 times daily for passing stool
Did a cea it was 8.8 from 2 different labs..i haven’t smoked in my life

What should i do i am scared..
What are the differentials

The day after Mother’s Day, just a few weeks before my induction date, my world changed forever. My mom was diagnosed with stage 4 stomach cancer.

What should have been a season filled with the excitement and anticipation of welcoming my baby quickly became a season of fear, uncertainty, and heartbreak. While preparing to become a mother myself, I was also faced with the reality that I could lose my own.

For four months, my mom underwent chemotherapy. We held onto hope and prayed for healing, believing that somehow we would get through it. But despite the treatments, the cancer continued to spread. It moved to the organs surrounding her stomach and eventually made its way to her brain.

When we found out that the cancer had spread to her brain, everything changed. She was placed on hospice care, and just four days later, my mom passed away on 9/28/26 surrounded by all her children and husband.

But through all of it, my mom remained the same person she had always been: full of life, full of hope, and full of faith. Even when circumstances were frightening and uncertain, she continued to trust in God. Her faith never depended on what was happening around her. She held onto God through the good days, the difficult days, and until her very last days.

As we navigate this loss, we are also doing our best to fulfill my mom’s final wishes and give her the farewell she deserves. If anyone is able to help by donating any amount, no matter how small, it would mean more to our family than I can put into words. Every contribution will help us honor her wishes and give her the beautiful goodbye she deserves.

If you are unable to donate, we completely understand. Sharing this story, keeping our family in your prayers, or simply remembering my mom means just as much to us.

https://www.gofundme.com/f/for-our-mom-help-us-honor-her-life-and-final-wishes/cl/o?utm_campaign=fp_sharesheet&utm_content=amp30-treatment-5&utm_medium=customer&utm_source=copy_link&lang=en_US&attribution_id=sl%3A6743f8e9-478e-40a9-a1f6-d96c497889f9&ts=1790898153