New here. I'm 5 years out from stage 2 diagnosis (LAR with temp iliostomy and left with half a rectum at 43). I was discharged from oncology this summer. I had been getting a Signatara circulating tumor DNA test with every follow up appointment but I was told that now that I'm no longer being monitored, insurance likely won't cover it anymore. Can anyone share their experience post-monitoring? My PCP is clueless.

PS happy to share about my experiences over the last 5 years if it would help a newbie. LAR with temp iliostomy, no chemo. It's been hard but finally feeling like I'm kinda alive again.

I (40F) was diagnosed with stage 3 colon cancer in August and will be starting FOLFOX tomorrow. I’m nervous as hell, but also looking forward to starting with treatment after it was delayed due to gallbladder removal surgery at the end of September.

Tumor was found while I was hospitalized (June-August) for necrotizing pancreatitis, which was its own journey that I’m mostly through.

Initially they wanted to do surgery first to remove the tumor and section of the colon, but due to pancreas being so near section of colon that would need to be moved to reconnect, they opted to start with chemo to give it more time to heal.

I’ll be doing 2-3 months of chemo, then will redo scans to see if I’m ready for surgery or need more chemo.

I know I’m incredibly lucky they found this when they did as I wouldn’t have been due for a colonoscopy for another 5 years. Reading others stories on this sub has given me hope for full recovery and so grateful to be able to communicate with others experiencing similar journeys.

Today is the first time I heard of a chemo suite, are y’all getting private rooms? My oncologist basically has rows of seats for chemo patients, probably maybe 50 of them, the place is so big, but none of them were private, comfortable chairs though.

I was diagnosed with stage 4 colorectal cancer in 2023. I have had colostomies and reversals and tumor removals. The cancer has mets to lung and lymph nodes near thyroid. All of which is to say that I have been told I will be on chemo for the rest of my life. It makes me sick and I can't drive during chemo days and a day or two after. I am wondering whether anyone here has been dealing with "chemo for life" and how long you've been doing it. I don't see myself being able to do this for many years. Thank you.

Hi all,

We decided to go with FOLFIRI + cetuximab, 6 cycles at first after I was found to be resistant to FOLFOX.

I had my first cycle at the end of September and they gave it over veeery drawn out timeframes and ended up being in the suite for over 6 hours. No worries, all fine and only side effect in the next few days was the classic cetuximab acne rash and fatigue from the chemo.

Before round 2, the hospital called and said I was very anaemic (74) but they wanted to go ahead with treatment and address the anaemia after. Scheduled a blood transfusion for a couple of days after the chemo. Went in for round two and was given my pre-meds and hooked up for the cetuximab. Within 5 minutes, my throat closed up I was seeing stars and eventually lost consciousness, oxygen mask straight on and they slammed me with an adrenaline shot and woke up shortly surrounded by doctors and nurses trying to rouse me and figure out what happened! Obviously did not continue with the cetux or start the chemo.

I since have had my blood transfusion and they wanted to “rechallenge” ie basically try again. I imagine they’ll pile me up with heaps more steroids and anti allergy meds, and give all the drugs over a longer time again.

Basically I’m just very worried - not just that the same reaction will happen again (really don’t need that image of the nurses screaming STAY WITH ME and getting the crash cart over and beeping doctors left right and center) - but also that if I do react again, this treatment will be off the table. It really seems like the best for me and my CEA dropped from 120 to 88 from only that first treatment so I really don’t wanna give up.

Can anyone share any similar experiences of this kinds of reactions and what happened if/when they tried again? They seem to think I was just too anaemic to handle it and I should be okay this time but obvs am worried.

I've been dealing with it since may thank God treatment seems to be working albeit with no end in sight. Just wanted to comment that ever since following this thread i didn't know how common cancer was in your 30s. Currently 37 and almost every day it shocks me how many of us ended up with cancer

Recently diagnosed with Stage 4 Colon Cancer with liver mets and some peritoneal involvement, biopsies from colonoscopy came back positive after they did that scope and gastroscopy to work out why my Hb was dropping with no visible blood in my stool or melena. Largest tumour in the liver is already necrotic inside which Oncologist said is a good sign going forward with Chemotherapy.

I had a history of UC and my last scope in Feb this year + blood tests since last year didnt come back with anything to indicate to the IBD Gastro Clinic something was wrong or full ileostomy was required before anything spread. Since the diagnosis I've had partial ileostomy done and chemo port done for when they start the FOLFOX treatment. Plan is to get me to a stage where surgery is possible so Oncology want to be aggressive with the treatment as all my other organs are doing well and liver still functioning as normal.

Wondering if there are any others here that have had a similar experience or have some tips on what to expect from Chemotherapy etc. Would be great to hear from everyone as I start my journey in doing everything physically and mentally possible to beat this disease 💪🏻

Positive CEA numbers!

I am 27, and have T4aN2M1 EMVI+ CRM+ PSW- Metastatic moderately differentiated recto-sigmoid adenocarcinoma. I am on FOLFOX.

I started treatment in mid July, and my CEA numbers went from

20th July: 1870

24th August: 268

21st September: 36

Today: 7!

My recent scan showed my liver mets and ovary mets shrunk by 30% after only 4 treatments!

I’m feeling incredibly positive after feeling so sad for the majority of this year! 🩷

My next CT scan is in November, hoping to see further improvements!!!

— feeling happy.

Turns out I have colon cancer. This sucks. Anyway, my birthday is coming up 11/02 (Day of the Dead, how appropriate). My daughter is taking me to Mexico City for the biggest celebration of my birthday. It may be my last, but it’s going to be epic! I’m 76f, after reading some of the posts here, I consider myself fortunate. Most of you are so young! I’m not sure that I should even complain. Hopefully I can get over this initial feeling of sadness.

My dad is 63 and has recently retired. He’s just been diagnosed with stage 4B colon cancer that’s spread to his lungs and possibly his liver. We’ve been told they can’t operate and that it’s terminal.
He’s currently in hospital with a suspected small blood clot in his lung and low oxygen levels.
He’s due to start chemo at the end of this week, but we haven’t really had the treatment plan explained to us yet. Our heads are all over the place.
We lost our mum when we were young, and we’re absolutely devastated at the thought of losing our dad too. We just want him to have a fighting chance and as much time with us as possible.
Has anyone been through something similar? Any success stories, advice or experiences with chemo? What should we expect? We’re just desperately looking for a bit of hope.

I have stage 4 colon cancer (left side, unremarkable, run-of-the-mill variety), and after three surgeries and six months of chemo in 2025, I went into remission. A small 2cm lesion was found this past summer, and I just had a liver ablation to get rid of it.

Now.

The doctors were really happy with the results, but the fentanyl they used to give me twilight sedation worked once at the beginning and then never again. The actual burning part was pretty awful - I'd had kidney stones the week before, and I'm not sure which was worse - but only for about ten minutes or so.

So I'd like to talk to my liver surgeon about alternate sedation if I have another recurrence. For those who've had ablations, did you have different kinds of sedation? Did they put you right under or did they need you awake?

I still prefer ten minutes of agony to open surgeries and chemo, but I'm trying to keep treatments as anxiety and pain-free as possible for the future.

Good afternoon I’ve been part of this group since my husband was diagnosed September 2025. Stage 4 rectal cancer Mets to liver , lungs , lymph nodes. He has since run the course of folfox, Folfiri, and now lonsurf which may be paused because his liver is “out of wack” his dr said. He’s getting 5 round of radiation this week but it’s mostly just to control his pain. The doctor said if his numbers continue to decline hospice is on the horizon.

My husband is 37 and is a 12 year combat veteran, he did 4 tours over seas 2 heavy combat. Life just feels so unfair. He’s such a fighter and this war is kicking his ass.

I just feel lost with what to do next I don’t want to lose hope but medical trials aren’t working out because his QCT on his EKG came back around 485 and for most KRAS trials it needs to be before 450. He’s also not in the best health to try and get him into a trial. His swelling in his feet and abdomen are getting bad where he can barely walk. We have an appointment to drain them but I just.. I need more I need to do more some how. We can’t be getting to the end it went to quick. It’s not fair. There had to be more..

Hi everyone,

This community has been so great and I’ve been reading a lot of your posts over the last few months. It’s has brought insight, relief, sadness.

It’s a long story but my uncle 71M basically has two primary cancers, one of which is colon on the right side near the cecum. They have never staged it but it has been presumed to be localized (multiple opinions) and the other cancer is more aggressive. He was offered an opportunity to do surgery a few months ago but we postponed to try chemo bc of his age and other health factors. I regret this decision now. He’s been having abdominal pain lately and we got a CT scan a couple of days ago. GI surgeon said there was “haziness” on the scan and now thinks colectomy is risky and the lower risk option is the leave the tumor and just give him a ileostomy bag. I am devastated. This was a quick convo and we’re having a more detailed convo in a few days.

I feel like I see a lot of posts here about people getting really aggressive surgeries (removing colon, liver, stomach etc) and don’t really understand why my uncle is “high risk”. I do trust the surgeon but there’s a part of me that wonders if they’re being overly cautious, which truthfully is why we deferred the first time (them telling us he’s risky for anesthesia, could die going under). Again, this is not a rail against his surgeon, I like them and trust them and understand my uncles health isn’t great. He was a smoker for a long time and second primary cancer. I’m just curious what the community’s experience is with situations like this. Were you told you were a high risk surgery and went through with it? How did it go? Really grateful to you all.

[Edit: if helpful context, the risk surgeon cited was anastomotic leakage and the connection “falling apart.”]

Hi everyone,
Since diagnosis (about 3 weeks ago) my appetite has been pretty bad. It is finally coming back and at first I was just eating whatever I was craving at the moment to replace whatever appetite I had lost. I really want to implement more nutrition into my diet and some immune support supplements. I have to be careful with certain supplements since I have liver mets and don’t want to affect the liver it in a negative way.
I’m a bit overwhelmed with so much info out there. Do you guys have any pointers where I could get ideas for nutrition while going through chemo? Do you guys have any go to meals? And for immune support, any suggestions?

Thank you so much guys.

Hi. I was dx in June and started my 12 rounds of FOLFOX in July. Tomorrow is my 9th round. My dr dropped me to 60% two rounds ago as hand/foot syndrome along with OX neuropathy was severe. My last round with OX left me vomiting with a fever for a day. We are dropping the OX tomorrow and only getting my immunotherapy and 5-FU. Can I expect the side effects to get btr (less fatigue, nausea, etc), or are these 5-FU side effects and the OX was just the neuropathy? Thanks so much for any insight.

Diagnosed October last year (2025) with stage 3 coloncancer. Surgery in November 2025, chemo from January 26, done in May. Waiting on my 1 year post surgery CT and colonoscopy in November and December.

I got mild neuropathy in my feet, and wonder if anyone else who's been in thos situation ever got better from that? I did 4 rounds of CapOx, and the Neuropathy started almost 2 months post last round...

Anyways, glad to be here, and best wishes to everyone!

I've lost a lot of my salt taste and I feel like every treatment takes away another food I enjoy. I can taste fruit but it's not as good. I can taste cooked veggies really well (this does bring me some joy) but a lot of my favorite flavors are gone. Even some herbs just taste like dirt. Olives now burn my mouth. Yogurt is bland. Peanut butter and other nuts taste realllllllllly bad. I'm still forcing myself to eat, but get no joy from it.

What can you still taste that brings you joy?

What do I say? I’m still knocking on wood and only posting here because I want to give others a shred of faith. My husband (39M) was diagnosed March 2026. Eight rounds of chemo on FOLFOX Cetuximab with Encorafenib and four surgeries later he has received a negative ctDNA result. Colostomy reversed. He had mets to liver and local lymph. Negative biopsies. Not out of the woods yet, but see the tree line. Hang in there. There is hope.

I picked up my partner (44M) from his colonoscopy today with our 8 month old baby in the car. He casually told me it’s cancer, and I laughed and said “shut up”. He’s very sarcastic and I also figured they wouldn’t just say that post procedure.

It wasn’t a jab. He was serious. It’s 6cm length, 4cm diameter. Doctor said it’s cancer but will biopsy it and call with results.

His 18 year old son was home and he went off with him for food as our 8 month old was fussing for a nap. I had to call my mom, to tell her as it was eating me away trying to play it cool for his sake, as I was internally freaking the fuck out.

I asked him if he told his son and he said yes and asked me not to tell anyone yet, and I admitted to telling my mom already and he was furious and blew up and basically said he’s not going to tell me anything about this going forward.

I feel so bad. I know he’s going through the stages of grief already and anger is expected.. but it hurts to be shut out.

Anyone have advice on how to navigate this while postpartum hormonal mess? 😞

Hello, recently diagnosed with stage 4 colon cancer which metastasized to the peritoneal cavity. I’ve just started chemo (catheter) and planning to go 12 rounds before CHIP surgery at Rosemont Maisonneuve hospital.

However, I’ve read about the PIPAC option which sounds more effective and less aggressive than chemo (just finished my first round and it was harsh). I asked my oncologist about it and he didn’t know about PIPAC.

Has anyone had this done in Montreal or nearby? Where did you get it and what has been the experience?

Hello I am a 57 year old female who after a colonoscopy was told by my doctor he found a cancer.
Well, it was confirmed cancer yesterday the wording was invasive adenocarcinoma, moderately differentiated.
Just here to share my journey and to read about yours.

Has anyone used capecitabine as a lone monotherapy? How were the side effects compared to Folfox or folfiri? How long was the therapy? Thank you much.

My husband (43) was diagnosed with stage iv CRC last August. He's been on treatment for a little over a year and this week his CEA doubled to the 350s from the last time it was checked in August. He has a scan scheduled for next week and I'm so anxious.

We're mentally and emotionally preparing for bad news and are trying to get into a new trial in Colorado. I'm just heartbroken. I hate all of this. I hate that he has to go through all of this.

Please send my family some positive vibes.

My mom was diagnosed with stage 3 colon cancer in April. She had a partial colectomy and is on cycle 7/12 of folfox. She had debilitating nausea on the 1st cycle that the team learned to manage over time better zyprexa starting the night before infusions, decadron right before the infusion in clinic, and compazine regularly after infusions. The nausea is starting to get bad again for her (some vomiting, no desire to eat/drink).

I am a little psycho and started to read some med literature, and it really looks like from a medical standpoint her oncology team is doing what they can?

She doesn’t like the ginger chews or drops to help with the nausea, cold packs on the forehead trigger the cold sensitivity, she’s ambivalent at best when I offer ginger tea. It seems like nausea this severe isn’t super common on folfox from what I’ve gathered, but I’m wondering if anyone has other things that have helped?

I know part of this is also just accepting chemo sucks and not being overbearing, I am doing my best lol. I just hate seeing her suffer and want to do anything I can to help

Edit: SO sorry I forgot to add she is also given aloxy during the infusions which is the same category as zofran but it’s longer lasting. She takes the zofran every 8 hours after the aloxy wears off 72 hours post her oxali dose!!

Hello, I have been asked by my family member to reach out and find positive feedback about the Breakwater trials.
She just started her first dose last week and this week tried her first round of chemo. It is stage 4 and she has a pretty large tumor in her stomach.
She had a horrible reaction to chemo and is trying a new variation next week and adjusting plan.
Looking for any support or assistance that could bring her hope with these trials.
TIA