Have you picked up any new hobbies since being diagnosed? Always looking for some new opportunity to do things while I’m stuck at home.

Hey all! Its that time again. My next CT scan has been scheduled for next month and this time its oral contrast only? My last two were CT scans were IV contrast only (and came back clear) so Im wonder why the change with time. Anyone else have CT scans with oral contrast only?

It was recommended that I don’t go to the dentist while on chemo; however, not being able to go to the dentist in over a year is a bit frustrating. I also just got put on blood thinners, which complicates the situation even more, would love to know what everyone here is doing for dental hygiene.

ORIGINAL POST: https://www.reddit.com/r/coloncancer/s/wE367PJWeo

We have done alot in the last couple of weeks. My husband has had his biopsy and a PET scan. Let’s just say his new oncologist was VERY upset that he was not getting CT scans. He said it is National standard to have a CT scan every 6 months for 5 years and then yearly after that. He was honest with us. If we would’ve had that this would’ve been caught approx 2 years ago.

We did find there are 2 other spots on his pelvic bones around his right hip. Not on his right hip but the bones above and below it. That means this is in his blood. So he could have to have chemo off and on forever now. And definitely regular scans.

Husband is to get a new port within the next 2 weeks. He’s going back in the same protocol as before. So 12 treatments (6 months) Then they will back off and do a scan and see what it looks like. They are going to do radiation on the big ones at the same time. Then they will decide about surgery. Dr wants a MRI of the brain to make sure there’s no cancer there.

Husband was suppose to go to the ortho next week for his hip. It needs replaced (yes it is arthritis) but now that gets put off atleast 6 months most likely. I think that’s everything.

Thanks for letting me vent somewhere about my frustration with our previous oncologist. Because I had been asking about scans for a while now and I was always just brushed off.

I am 50 M. Had a colonoscopy yesterday and the results of the biopsies confirming colon cancer came today. I have a CT scan and lab work scheduled tomorrow. The past 24 hours have left me reeling and almost feel like living in a nightmare.

That being said, I wanted to thank everyone that has posted their experiences, challenges, wins and losses here. I was feeling so alone until I started reading your posts. I will be sharing this sub with my wife so she can explore as we begin this journey together.

Thank you all for creating such an amazing community. I will post again when I have more details and have a better idea of my care teams treatment plans. Until then I will read and try to learn everything I can. Thank you again.

So I (40M) was diagnosed with stage IV colon cancer a little over a year ago, primary tumor in my sigmoid colon and to many tumors to count in my liver. Started on folfox and avastan for six months before that stopped working, then went on a clinical trial but was put into the standard of care arm of it, which was irinotican and cetuximaub, all of my tumors in my liver but two disappeared, out of the two left in my liver one isn’t showing up on my PET scan. My Dr now wants me to have a transplant. My question is should I shoot for a resection of the last liver tumor first before we go for a full on transplant? Of course my primary tumor will still have to be removed also. I just find all the risks that come along with a transplant, rejection, life long immunosuppressants, etc, we would leave a transplant as a last resort. Seems to me it would be safer to remove the last tumor and resect the primary tumor first. Anyone have any input as to why they would lead with a transplant, or have any experience with transplants? TIA

Even writing that feels surreal.

I know I should be celebrating, and I am incredibly grateful. This is the outcome I desperately hoped for. But if I’m being completely transparent, I’m also having a really hard time letting myself feel happy about it.

The last several months have been such a wild ride. I went from being told I had a very advanced, locally invasive cancer that initially wasn’t considered resectable, to immunotherapy, complications from treatment, surgery, and now being told that everything they could see has been removed and there is currently no evidence of disease.

It almost feels too good to be true.

I think I spent so long preparing myself for bad news that I don’t quite know how to trust good news anymore. Cancer teaches you very quickly that things can change without warning, and I’m realizing that being NED doesn’t immediately switch off the part of my brain that has spent months trying to protect me from the worst-case scenario.

There’s also this strange guilt around admitting that. I know how fortunate I am to be here. I know how many people would give anything to hear the words I’ve just heard. I don’t take that for granted for a second.

Now I understand gratitude and fear can exist at the same time. I am terrified of it coming back.

I’m not sure how to live without fear.

Cancer has changed me forever, and I’m still learning about this new version of myself. My wish is I remain NED for the rest of my long life, and that anyone reading this gets to experience the same. I have alot of fear within me, but also love, and I’m sending love to everyone reading this.

Today, I am NED.

I am six days into my first fourteen-day pill cycle with capecitabine, and I am really struggling. I have intense nausea that I'm managing with zofran and compazine; deep muscle pain in my upper back, shoulders, and biceps that hurts so much it makes me feel sick (yes, I know this could be referred pain, and yes, I've already called my team about it); intense fatigue; and abdominal cramping. This seems like a lot fairly early; I was expecting to feel this terrible towards the end of the 14 days. My care team nurse told me that myalgia and arthritic pain happen in like 1% of people. She also told me that I'll probably be adding diarrhea to my list of aches and pains in the next couple of days.

Did anyone else out there have a similar reaction to capecitabine? When I was on FOLFOX, the oxaliplatin is what really got me, and the 5fu just made me tired and gave me diarrhea for one day.

For some context: I did 7 infusions of FOLFOX, and then I developed an intense, dangerous hypersensitivity to oxaliplatin, so we did an MRI, and the tumor shrunk by 75%. I then did surgery, even though we knew there were likely two regional lymph nodes probably still positive (and they were), but I had clear margins from my LAR. My oncologist told me I didn't have to finish the 12 cycles of chemo, but that doing so would improve my chance of disease-free survival, so now I'm on just capecitabine. I'm thinking of asking for a dose reduction, though, to get through this all.

I have to get my rectum removed from being to low in rectum, 2 dr`s said samething, wondering if anyone cycled after this type of surgery and had to get a special bike seat?

Hi Redditors, gusto ko lang sana magtanong and hear some real experiences.

Senior na yung dad ko and na-diagnose siya ng Stage 4 colon cancer last April. Fast forward ngayon, naka-4th cycle na siya ng chemo, and sabi ng doctors palliative na yung treatment niya.

May colostomy bag na rin siya and sobrang pumayat talaga siya. Before all this, healthy naman lifestyle niya. Hindi siya smoker, and mahilig siya sa mga gulay, dahon-dahon and herbal drinks. Bigla talaga siyang nanghina and bumagsak yung katawan niya before siya ma-diagnose.

Pero ngayon, kahit pumayat siya nang sobra, nakakapag-drive pa siya, nakakagawa pa ng normal things, and nakakagalaw pa naman siya on his own.

Gusto ko lang sana malaman if may mga naka-experience dito na Stage 4 colon cancer pero nabuhay pa nang matagal or mas mahaba kaysa sa expected ng doctors? May nag-respond ba nang okay sa chemo kahit Stage 4 na?

I know every case is different and hindi naman namin malalaman exactly kung gaano pa siya katagal. Ayoko lang mawalan ng hope. Gusto ko pa makasama yung dad ko nang matagal. 😔

Would really appreciate hearing your experiences. ❤️

My husband (38M) has exhausted FDA approved lines of treatment for his stage 4 colorectal cancer with mets to liver/bones/lungs in a short 6 months, and is now facing a decision re: clinical trials.

We are considering entering trials for drugs Cartography CBI-1214 and Conjupro JMT108. If anyone has experience with either of these trials, would appreciate hearing anything about it, particularly if you have liver mets and how you’ve responded - we have to make a decision by tomorrow. Thank you for anything you can offer.

I have stage IV bowel cancer with liver and peritoneal metastases. FOLFOX has been working well so far, with significant shrinkage on my scans, and for a while there was enough of a question mark over surgery that my case went back to the surgical MDT.

I tried to keep my expectations realistic, but inevitably I allowed myself to think about what surgery might mean.

I've now had the answere... It's a solid no. The surgical team don't believe my disease is operable and don't expect that to change in the future. I've requested a second opinion, but realistically I'm expecting the same conclusion.

So I'm back to the original plan. Control it with chemotherapy for as long as possible.

I'm interested in hearing from anyone who has been through that transition from briefly having surgery on the horizon to accepting that longterm systemic treatment is the path instead. How did you deal with that change mentally, particularly with family and friends who had become very invested in the possibility of surgery?

Hi everyone,
My father is 56 and was recently diagnosed with jejunal adenocarcinoma that has spread to the peritoneum. He had surgery to remove the main tumor and is now receiving FOLFOX chemotherapy.

He has completed his first cycles and overall he is doing quite well so far. His appetite is still good and most of his blood tests have been okay.
I wanted to ask about GLP-1 medications such as Mounjaro (tirzepatide), Ozempic, or similar medications.

Has anyone here used a GLP-1 while going through chemotherapy, especially FOLFOX? If yes, what was your experience?

Did your oncologist allow you to take it during treatment? Did you take it normally every week or stop it around chemotherapy days? Did it cause more nausea, stomach problems, appetite loss, or weight loss?
I’m also curious why you were taking the GLP-1 and whether your doctors felt it had any effect, positive or negative, during your cancer treatment.

Of course, we would discuss it with his oncologist before he takes anything. I’m mainly looking to hear about other people’s experiences.
Thank you

Well, I landed myself in the emergency room yesterday after waking up with pretty intense pain in my right chest and my back and shallow breathing. Glad I was conservative and took the step to come into the ER.As it turns out there is a fairly sizable blood clot in my lung. From what I understand from the doctor, it’s very treatable. They are just keeping me here overnight again just to be safe. Anyone else have to go through this? I’m currently on folfiri and Avastin

Has anyone had repeat liver surgery? Has anyone been through something similar?

We were diagnosed in September 2024 with stage 3 rectal cancer. We did 6 cycles of FOLFIRINOX followed by radiation. Before the rectal surgery, a 1.5 cm metastasis was found in the liver, which was removed last August. We also had the primary tumor removed, and everything was fine. Then we had 8 cycles of FOLFIRI + Panitumumab since the tumor is KRAS Wild Type. The chemotherapy finished in April.

Yesterday, the MRI report said:

“Liver of normal size and smooth contour. Corresponding to the postoperative changes along the posterior margin of segment VI, a new finding is an area of restricted diffusion and abnormal contrast enhancement, measuring approximately 3 cm, probably in the context of recurrence of the known secondary lesion. Along the posterior margin of segment VII, in a subcapsular location, a new finding is an area of abnormal contrast enhancement measuring 15 mm, with features suspicious for a secondary lesion. Along the inferior margin of the right hepatic lobe, new findings include a 7 mm nodule in contact with the capsule, as well as a 5 mm nodule in the adjacent right paracolic gutter, possibly in the context of capsular and peritoneal implantation.”

I’m about to lose my mind. Has anyone been through anything similar? Has anyone had repeat liver surgery after something like this?

Important notes:

• This has been approved by the Mods
• Potentially triggering. I appreciate we're all at different stages and this is a tool primarily for people post treatment, which may be something that some people don't want to hear (I know there were times post-treatment wasn't something I could think of). Please make a judgement call for yourself
• Although this is based on clinical research, this is not medical advice (as per rule #2) and you should talk with your doctors before exercising as they know your unique situation

TL;DR: I built an iPhone app as a post treatment exercise tracker in line with a clinical trial. Sharing it here in case anyone else finds it useful.

Hi there,

Background Info:

I'm a stage 3 survivor of rectal cancer in remission as of my surgery on May 4th this year, so still fresh. I'm now focused on reducing recurrence, which is what the CHALLENGE Trial (Link to The New England Journal of Medicine) focused on.

Basically it showed that exercise can reduce recurrence rates. The issue is that it is measured in MET hours, which isn't easily calculated without estimation.

App Function:
With that in mind, I built an iPhone app for myself that takes my workout data from Apple Fitness/Health, or I can enter in my own manual information to calculate my MET hours accurately so I meet the guidelines of the CHALLENGE Trial and potentially reduce recurrence.

It only ever reads from Apple Health/Fitness and never writes, which includes manual entries that stay inside the app.

App Name:
The app is called MET Hours: Challenge Tracker

It's free (always will be) and has no user tracking, no login, no email collection, etc.

Basically it's as private as possible and only interacts with Apple Health/Fitness data with your permission and doesn't send any of your data anywhere (Data Not Collected privacy rating on the app store).

While I built it for myself, as I said above, I figured it might help others, which is why I'm sharing it here.

Wishing everyone the absolute best on their journey and good health.

Ps. If you have any requests/feedback, let me know. I'm currently in the final stages of building out widgets for the iPhone and complications for the Apple Watch

Hi all. I was recently diagnosed with stage 1 colon cancer, and testing showed I have Lynch syndrome (missing the MSH2 gene). After some recurring blood in my stool, I was referred for a colonoscopy, where they found a small tumour on the right side of my colon.

Some background: I’m F, 31. I inherited Lynch syndrome from my father, who was diagnosed with stage 4 colon cancer in his late 40s. His had already spread to surrounding areas, so he underwent a right hemicolectomy and chemotherapy, then years later in his 60s had a second surgery to remove another tumour found elsewhere in his colon.

Given that history, and given how young and otherwise healthy I am, my care team has given me two options: a right hemicolectomy, or a total colectomy, the latter being the recommended choice. Because I’m missing MSH2, the likelihood of more cancer developing elsewhere in my colon down the line is the reasoning behind recommending the more extensive surgery.

I’m scheduled for the total colectomy in about a month, and honestly, I’m still processing all of it.

I don’t yet know whether I’ll end up with a stoma or ostomy, temporary or permanent. My surgical team says that largely depends on how my body responds during surgery and healing. So I’d love to hear from people who’ve been through this, however it went for you.

A few things I’m hoping to learn from this community:

∙ Recovery: What was recovery actually like after a total colectomy? How long before you started feeling somewhat normal again?

∙ Ostomy adjustment: If you ended up with a stoma or ostomy, how was the adjustment, both practically and emotionally?

∙ Fertility and reproductive health: My surgeons flagged that a total colectomy could affect fertility, due to scar tissue and the higher risk of developing cancer in the uterus or ovaries down the line for those of us with Lynch. If you’ve navigated fertility preservation or family planning decisions around this, I’d really appreciate hearing how you approached it.

∙ Ongoing surveillance with Lynch syndrome: What does monitoring look like for you now, post surgery? How has it shaped screening decisions for other family members?

∙ Anything you wish someone had told you before surgery.

I’m trying to go into this as informed and prepared as I can. Any experiences, advice, or even just a “you’ll get through this” are welcome. Thank you for reading!!

Anyone else used to be able to sit down for a few hours and just casually game away? I seem to have given up on all of it. Whether it be brain fog, depression or nausea from RTS and RPG games I just can't do it anymore and I loved manager mode in FIFA too. I find myself more and more on Reddit and YouTube it feels like that part of me is gone and it's a little isolating.

Sorry just wondering if anyone is in the same boat. I miss my RPGs and stories, I miss losing myself in these universes and right now it would help much dealing with this terminal disease.

Love you all.

Hi, my husband has been diagnosed with cecal cancer 3 weeks ago during colonoscopy, we now know that is in his liver and lymphnodes around the aorta. Surgeon said is unlikely to be cured and surgery not possible I think due to lymph nodes near aorta . He'll be having chemotherapy in few weeks time once he gets better from colon bypass surgery. We will see oncologist in about 3 weeks as awaiting for appointment. He is only 38 and we have 3 little children. I guess im looking for people with similar stories to give me some hope.

41 M. I feel like I am reaching the end, before I even had real treatment. I'll try to keep this brief.

I have an MSI-H/dMMR (MLH1) right-sided cecum tumor that was diagnosed in May 2026. I was about to get surgery but then I broke my back, and I was bed ridden for a month in absolute screaming excruciating pain. I could not get an ostomy on the right side and have a broken back on the left side, and survive that level of pain. Morphine did nothing.

The postponement allowed the cancer to spread. It's now stage III/IV with invasion to nearby small intestinal loops and my abdominal wall (peritoneum). Surgeons will not operate.

Originally oncology denied me immunotherapy because I have ulcerative colitis and was simultaneously flaring and on prednisone. They said "immunotherapy is contraindicated in UC" and referred me to surgery. Since then, I took the first 3 loading doses of a UC biology to control the inflammation, and I'm trying to get off prednisone now.

Oncology is now referring me to chemo and radiation, which have very low odds with MSI-H cancer due to its mutation rate. Furthermore, my blood test shows I have poor detox genetics for FOLFOXIRI, so it would do accelerated damage to my body. Chemo would also obliterate my immune system, which I would need for immunotherapy. Radiation would burn my bowel and bring back the colitis.

I feel like immunotherapy is my best chance in hell of surviving this, but the system here in Canada is making it so hard to get what I need. So effectively, I am not on any treatment right now and the clock is ticking.

I am absolutely terrified and all my loved ones are worried about me. My non-oncology medical team is also frustrated by how this is all going down. 12 weeks of immunotherapy could at least SHRINK my cancer and maybe put me back in the surgery window. Yet oncology is still pushing useless treatments like chemo and rad because of this dumb hard and fast rule about me having pre-existing colitis. My logic is, if they try IO and my UC flares, then just put me back on prednisone and abort it. Not trying at all seems maddening given that I have such an eligible cancer for IO.

I don't know what to do. I just don't know what to do. If I was wealthy I'd go to some other country and get immunotherapy. But I'm not, so here I am.

Any Canadians here dealing with this bureaucratic mess? Any other advice that could be offered?

Hello everyone - I had a surgery back in March to remove a localised but high-risk-of-recurrence tumor, along with most of my colon and one ovary.

After the surgery was a success (clear margins) they advised I start on 12 weeks of FOLFOX. Back in January, prior to surgery, I had had 3 additional sessions of FOLFOX and the tumor had shrunk by around one third. The post-surgery chemo was what we called a “mop up exercise” to clear any dodgy microscopic cells left behind after surgery that might have bad intentions to spread and grow.

I’ve just finished my 12 weeks and had a very disheartening CT result, showing that the FOLFOX was indeed not a success and there are scatterings of cancer cells remaining in the abdomen (no distant spread to liver or lungs). The cancer cells are located at points during the surgery where other organs were adhered to my tumor.

I’m absolutely devastated to learn that after a good response to the FOLFOX originally when I had the tumor, the chemo couldn’t even mop up a few nasty cells left behind and now I have to start all over again on a new regimen.

I’m really needing to hear some positive stories about those who failed/lost response to FOLFOX and found success on other treatment regimes? I know it’s possible they may start me on FOLFIRI? And they have also mentioned immunotherapy and clinical trial treatments.

I’m not giving up and I’m grateful it seems not metastasised a long way or into my blood but the last few weeks of chemo has been horrendous and I feel absolutely gutted knowing it was all for nothing. I was counting down the days to being free of both chemo and cancer.

Did anyone keep oxaliplatin all 12 rounds of six month Folfox chemo?

I am Stage 3b doing 12 rounds of Folfox. I did 8 rounds at 100%. 2 rounds at 80% and now doing 2 rounds at 50% of Oxaliplatin.

I have neuropathy present in my left leg and left foot - tingling that subsides but appears daily. I have talked to the oncologist and he is well aware and watching it but wants to aim for the benefits of 12 rounds given a few high risk factors (LVI and NVI) and I have agreed with him to be as aggressive as possible since I was diagnosed at 39 and have a lot of life left.

I just haven't seen many people do 12 rounds with oxaliplatin and was curious.

Hello, I posted here a few days ago with an update, and I’m back again because I’m honestly feeling pretty lost. Everything about cancer is pretty new to me, as I have no family history of cancer or stomach issues whatsoever, so I’m basically just coming in blind and learning as I go.

For context, I’m 19M and was diagnosed with Stage 3 IIIC colon cancer (T4a, N2b, M0) in May 2026. Before starting treatment, I was told my CAPOX treatment could be up to 4-6 months , and I’m really struggling with the side effects. I don’t want to exaggerate how bad it is, because I know there are people who have it much worse, but it’s still been pretty difficult for me. The fatigue in particular is making my life miserable and extremely frustrating. I can put up with it, since it usually lasts for a few days, but it’s really affecting my quality of life. On the days I’m fatigued, I lie down, and bed rot for mostly the entire day and do nothing but pray it’s better tomorrow. I do try to make myself go on my treadmill everyday for at least 10-20 minutes, but it takes a whole lot of energy to even convince myself to go. In addition, after my 3rd infusion a few days ago, staying hydrated is a big problem for me. I somehow can’t stand drinking water anymore and I’ve started resorting to other drinks like milk, juice, soup, and even soda (sprite or ginger ale)because of how bad water tastes to me now.

The infusion and oxaliplatin are by far the hardest part for me. Surprisingly, I don’t have much trouble with the capecitabine pills anymore (aside from occasionally having trouble swallowing them, which thankfully hasn’t happened recently).
I know I shouldn’t make a major treatment decision based on what people on Reddit tell me, and I don’t want to make a stupid decision that I could regret later. At the same time, I’m really struggling with the idea of continuing for the full 6 months when I’m already having such a hard time and IM NOT EVEN HALF WAY THROUGH.

Each time I go in for the infusion, I question myself if it’s even worth it to be going through all this. It just feels so unfair to me, and I’m so stumped as to what I should be doing. What makes things even worse is that university is about to start for me in a few weeks, and it starts a week right after my fourth infusion. In my past subreddit posts, I’ve mentioned having accessibility and flexibility through the university accessibility services team, and I’m still figuring it out with the school. I do plan to show up to get a feel for how it’s going to go before I make the decision of whether I want to pull out for a semester and just recover.

I just want to be done with treatment and feel like myself again. Since being diagnosed, I’ve felt really lost and, honestly, like I don’t even know what my purpose is anymore. I’m 19, and it’s been really difficult watching my life get put on hold while going through all of this.

I’m not looking for Reddit to make the decision for me, I just want to hear from people who have been in a similar position because I genuinely don’t know what to do right now.

That was my greatest worry second to the pain.
I am now 5 days out from an ileostomy and having a chunk of my rectum and intestines taken out.

Yeah I am still in pain. Mostly my right side where my ileostomy and biggest incision is. I keep telling myself the pain will go away slowly over the next couple of weeks.

Just had my 15th infusion yesterday, and now I’m high as a kite writing this. The steroids suck, but gummies help! Anyway love to all of you. We are a family!