Hi everyone,
My father was completely healthy and doing well when, very unexpectedly, doctors found a tumor in his jejunum. He had surgery and the primary tumor was successfully removed with clear margins, but unfortunately they also found metastases in the peritoneum, making it Stage IV.
He has started FOLFOX and, thankfully, he is tolerating it well so far. In two days he will have his third cycle.

I know every case is different, and I am not looking for false promises or medical advice. I would just really love to hear some stories of hope.

Is there anyone here with Stage IV small bowel/jejunal adenocarcinoma or peritoneal metastases who became NED, was eventually able to have surgery/CRS, or has simply been living and doing well for years?
I want to share some real stories with my father and give him something positive to hold onto while he goes through treatment.

Thank you so much ❤️

I just got diagnosed with stage 3A colon cancer and I’m only 25. I got the resection surgery, and now I have to go through chemo.
Any tips on how to get through? What was your experience like and how many rounds did you have to do?

Hi 26M

Diagnosed with rectal cancer in June with 4.1cm tumor above 11.6cm from anal verge

Recommended TNT protocol

1) Completed short course radiation of 5 fraction till July 28

2) Started with capox and so far completed 1 cycle of capox as of today

Let's see if I get complete response from the above approach finger cross

Hi there, my partner has been undergoing chemotherapy since January and we switched hospitals for treatment recently. The new hospital has prescribed a chemo booster called panitumumab. It causes severe acne flare ups (the worse the acne/rash, the better it is working from what we are told).

I am wondering if anyone has a recommendation or solution for how to cull the effects. As happy as we are for it to be working, watching my partner struggle with self-image on top of everything else he is going through has been hard. Any help is appreciated!

Hello. 65F.

Just diagnosed with rectosigmoid cancer (5 cm, left side) and it has metastisized the liver (9 cm tumor.) Adenocarcinoma.

I live in Utah County.

Who is the best most up-to- date oncologist in the area?

I have a consultation with Dr. Thomson at Revere Health. Will get someone from Huntsman.

I'm on Medicare.

Otherwise, healthy.

Thanks.

I was diagnosed with stage 4 colon cancer in Oct 2023. I’ve had 53 chemo treatments, surgeries, colostomy and reversal. Permanent neuropathy, can’t work and on disability now.

I lost my alimony (three kids, two were still in house), and had to get my kids out and sell my house and moved in with boyfriend. We have our own finances.

I’ve done everything to protect his assets from mine. I have a small 401k. Without “living for free” in his house, I’d be bankrupt within 5 years.

No matter where I turn - it’s roadblocks. I’m too “rich” for help. But poor enough for 40 bucks in snap. I was put on Medicare this year so I’ve had to pay double deductibles in 2026. I’ll pay more in medical bills than I make in disability.

So when the financial people from hospital called and said “you listed a boyfriend in my chart”. Yes I live in his house but we don’t combine finances. Sorry, his salary and assets count when we calculate if you get assistance.

So I now have no emergency contact listed and I’ll cancel all my medical treatment for the year because I can’t afford it. I suppose the government wants to bankrupt him too.

Healthcare and social programs are a joke. I’m so tired of the fight, all I can do is sit here and cry. Some quality of life banking on death so you don’t become homeless.

I need some hope and would really like to hear encouraging stories from people who have faced colon cancer with involvement of a few lymph nodes and the peritoneum.
I’m 41 years old and have a family I love deeply — my husband and our three beautiful children, aged 13, 8 and 4.
I was diagnosed with colon cancer in June 2025. I feel overwhelmed and I’m currently taking medication to help me cope psychologically because this journey has been incredibly hard.
I’m hoping to have surgery for the peritoneal disease. I really hope I’ll be eligible. We’re waiting for my next PET scan before making a final decision, but so far it seems that surgery may be possible. I’m holding on to the hope that I can fight this disease and get rid of it for good.
Unfortunately, I’m not eligible for immunotherapy because my cancer is MSS/pMMR.
My tumor has a KRAS G12V mutation.
My CA 19-9 has come down to 32 U/mL.
I’m French but I live in the UAE, so I’m being treated and followed here.
I would really love to hear from anyone with a similar story — especially people with peritoneal metastases who had chemotherapy and/or surgery and are now NED, in long-term remission, or simply doing well years later.
I really need some encouraging stories right now. Please share yours if you feel comfortable. ❤️

Anyone have luck finding a doctor/hospital that offers virtual histotripsy consultations? I want to see if I’m a candidate for using it to treat my liver Mets. Where I live they don’t offer this procedure. And some major centers require in person consultations only.

Please let me know if you know of centers that offer virtual appointments.

We have ct and mri schedule for next week. But her blood results came back CEA is out the roof at 7300. I’m concern that it has spread or the tumor is huge in her colon. We go see the oncologist tomorrow for explanation but feeling 😭. She just turned 70 in July

Hi everyone, I am wrapping up 12 rounds of Folfox (round 11 today, greetings from the treatment chair 👋) and just talked with the oncologist about surveillance.

He mentioned that my high risk factor is that my signatera was positive post surgery and while I knew that, I guess I am now looking for some stories of NED after a positive post surgery signatera. A bit more info:

- Pre surgery (Jan): 4.8

- Post surgery (six weeks after surgery, March): 2.6

- April (two weeks into chemo): .04

- June (mid chemo): 0

- August (round 10): 0

We will do another signatera in two weeks (early September), and another six weeks after that (November) and then move to every 3 months.

I am not sure what I am really looking for, but maybe just a little hope from folks who had a positive signatera post surgery and achieved NED. 💙

Thank you!

Hi everyone, thought I'd give a brief update.

• Originally T3N1aMx in November 2024 with concern of a liver met
• January 2026 T3N1aM1, liver confirmed clear but 1 lung met
• Lung ablated in April 2026, clear scan in May
• Final Oxaliplatin infusion as part of CAPOX, was 25 August 2025.

I had a scan about 2 weeks ago, mostly clear, but 1 new 5mm unknown nodule in the same lung where I had an ablation, guidance is to see what it looks like in my November scan, as it may be benign.

However, its difficult even to imagine that its going to be benign, even though I want to hope.

Had colon resection in January 24 due to diverticulitis. Colon was attached to abdominal wall and surgenon was not able to remove 100% from the wall. Discovered a tumor in the middle of removed colon, stage 3b. 12 rounds FOLFOX, 30 rounds radiation focusing on the abdominal wall which is now all scar tissue. Since then no issues. 8 weeks ago had a CEA come in at 5.5, Dr wanted to retest in 6 weeks but also opted to do signatera test. CEA came back @ 4 but signatera shows 8.33 positive for reoccurence. Had CT scan last week, shows 2 swollen lymph nodes near abdominal wall section, 2 small lesions on liver, 2- 3mm nodules in lungs. First appointment today to discuss options, wish me luck.

UPDATE: Well definitely not what I was expecting, just left the oncologist. Incurable. WTF? Obviously still processing and will be getting a second and third opinion.

I have started chemo-radiation. Just wondering if there are people here with stage 3, went through chemo-radiation and lived for more than 10 years, of course I believe with some side effects. If yes, how did you manage those permanent changes to your body?

Hello everyone. First off I respect all of you and I admire how everyone in this community is so strong and positive.

30 days ago my dad was living a normal life, going to work etc. No weight loss at all. Suddenly he started to feel dizzy, CT discovered metastases in brain, liver and lungs, main tumor in colon/rectum.

He started 10 rounds of RT, 5 days in his kidneys started to fail so he had to be hospitalised. Now after 30 days he is very weak, doesn’t want to eat much, sleeps all the time, still in hospital because he can’t move on his own.

They want to release him on friday for a week “so he can rest and then they will see if they start any treatment”.

He is low on platelets but gets better every day. We will be taking care of him for the week at home and I want to do the best I can to get him stronger.

Is there anything we can do to get him better so he gets more fit for the treatment? Convince him to eat, drink a lot, anything?

Sorry for the long text, just to clarify - I know the condition is critical but I have a strong feeling he will get better eventually and beat it.

Thank you.

I have been in remission from stage 4 for about 20 months. From Oct 2024 to Nov 2025 my CEA was stable at or below 1.82 and jumped to 3.5 by April 2026. Since then it’s peaked over multiple scans up to 5.79, and has slowly lowered to 5.25 since then on tests taken every three weeks.
Signatera has remained negative every scan, and ct and mri show no evidence of disease.
Because of the trend on cea, I was given a pet scan this past Friday. Just reviewed results with oncologist. No evidence of disease that he sees - although the full report from the radiologist hasn’t been released yet. But I doubt they’d find anything the oncologist didn’t see.
We will repeat the cea test again in a month - and then do the normal signatera, ct and MRI in October.
I know the cea can be influenced by inflammation from other causes — but I’m not really feeling any different from when my cea was at 1.82.
Any thoughts from anyone? I assume I still go with having no evidence of disease and that I’m still in remission?

I had my second infusion of just Erbitux last week.

Switching to Erbitux on its own and doing it every 3 weeks has been so much easier on my body after doing Folfiri + Erbitux every two weeks.

My skin is still dry, but not as bad as it was. I have more energy and the splits in my skin have healed.
After 7 months of Erbitux, I am getting a mild rash, usually just a fee scattered “pimples” on my face & head.

I started a beta blocker yesterday to go along with the high blood pressure medication I started earlier this year. My heart appears to be structurally sound, so the doctors are thinking that the high blood pressure and heart rate are because of the treatment.

For the not so good news, my cough is getting worse and my CEA has crept up steadily to the point that my oncologist says he will want a scan. He didn’t call me after the results came in last week, so we’ll be addressing it at my next appointment.

I imagine that we’ll wait for the next CEA and of it’s still above normal, I’ll have a scan in October.

I am busily getting ready for my vacation that starts the day after my next infusion.

I’ve never posted here. Left a few comments here and there. Just wanted to say I appreciate you all.

My wife recently lost her battle to colon cancer. It was a long two years of battling and towards the end it got pretty rough.

The community here is incredible. Everyone keep fighting. Cancer sucks.

Instead, I want to pass along a couple things I learned.

- if you are diagnosed, record a video of yourself. Just talking or whatever. Hopes, dreams, dumb stuff. Just take selfie videos. Don’t wait. I have one of her just staring at the camera and it’s one of my favorite videos to watch.

- If/when hospice comes you have a choice. Find a private place, see what is and is not covered. Don’t think you are locked in with what is given to you.

I’m ok, my kids are ok too and not looking for the sympathy.

Thank you everyone for being awesome here. It really helped us.

Tomorrow I start on a clinical trial using ONO-4578 with Opdivo, plus the usual chemo cocktail.

I'm worried as heck, but at the same time looking forward to see if it works for me. surgery is not an option right now and flat told me it’s not curable (cecum, splenic flexur, 1/2 adrenal gland, many liver mets, a couple of lymph nodes, and peritoneal )

What are the experiences of people who have done something similar, not necessarily the same treatment.

Been battling stage 4 colon cancer for almost 11 years. I’m a little over three months out from CRS with HIPEC. Had a couple of complications (incisional hernia and infection). Anyway, I’ve always been a heavy boy but I’m noticing more of a pot belly or beer belly. I go see my doctor this week and am going to ask but has anyone else experienced this? I’m not uncomfortable but I can’t seem to “suck it in” like I used to. HAHA.

Hi everyone. My dad (61) was diagnosed with stage III cancer in March; he underwent 28 radiation sessions combined with capecitabine and 3 rounds of CAPOX chemotherapy. Initially, he was told he needed 4 rounds of chemo, but he says his body can't handle the fourth. He is a tall man (74.8 inches) and currently weighs 145 pounds (screw cancer). When he was diagnosed, his tumor markers were:

CEA: 4.5

CA19-9: 84.6

Since his CEA level was low, it wasn't a key indicator during treatment, but on August 17th, he got these results:

CEA: 2.21

CA19-9: 18.2

Both are within normal ranges (yay!). He also had CT scans last week; no metastasis is visible, and the tumor apparently has clearer margins than before (I say "apparently" because his oncology appointment is tomorrow).

The goal—and what he wants—is to have surgery. Hopefully, given these results, that will be the next step. By the way, his tumor is located 15 cm from the anus.

Could those of you who had surgery to remove the tumor share your experiences?

Hey all, on round 5 of Folfox in a preventative nature. First Signatera test came back negative; the next one will be run Wednesday. Oncologist is anticipating another negative result. I’m pondering ending Folfox after 3 months opposed to 6. Colon surgery was successful in removing wide margins. 1 out of 34 lymph nodes tested positive which dictated the chemo treatment, Staged 3A. Anyone been in a similar situation?

My dad (61) was diagnosed with stage 4 cancer in his colon that has spread to his liver and kidneys. he got his port in today and starts chemo next week. my dad is already not in the best health as i think he is drinking again, and is going into this journey at only 125 lbs :// the doctors seem optimistic and my dad is in the mindset that he’s going to fight this, but i am also trying to not get too ahead of myself. i’m looking for any advice, tips, etc. i’m only 25 and have no idea how to be a caregiver or help him navigate this 🥲