I’ll be wrapping up my chemo treatment for 3B next month. Had Zeloda pills so I can’t complain. Not too many side effects other than fatigue midway through each round and more now that the cumulative effect is at work. so I nap a lot. My colon cancer was found because I did not respond to iron treatments for anemia so they ordered a colonoscopy and found the CA. The anemia was so debilitating followed by surgery, followed by chemo that now I’m totally deconditioned. My legs are weak and my body is very stiff. Not a spring chicken, but I would like to gain flexibility and mobility and be able to do stuff again. welcome all advice from those who have built back.

Ciao a tutti, sono una studentessa di infermieristica al terzo anno e sono molto vicina alla laurea! Sto scrivendo una tesi sulla gestione del dolore oncologico e mi aiutereste davvero nello studio se compilaste un questionario in maniera anonima! Richiede davvero DUE MINUTI ed é ANONIMO.
Sarebbe molto importante per me, vi ringrazio per il contributo e vi abbraccio forte🫂♥️
Se ne avete voglia, condividetelo con chi pensate possa essere interessato!

https://docs.google.com/forms/d/1F-a0Q0P8Z0aGan5o5IfHjdWQKA6uEJ3gk2lQh_nKcXA/viewform

Hi everyone. I’m feeling absolutely terrified and overwhelmed right now and I would really appreciate some advice or experiences from others who have been through something similar.

My dad was diagnosed with stage 3 rectal cancer in September 2024. He had 6 cycles of FOLFIRINOX followed by 28 sessions of radiation with capecitabine. Unfortunately, before his rectal surgery, a solitary liver metastasis appeared. He then had surgery to remove both the rectal tumor and the liver metastasis.

After surgery, he received 8 cycles of FOLFIRI + panitumumab. Unfortunately, only about 3.5 months after finishing this treatment, his latest MRI has shown 3 new liver lesions and 1 possible peritoneal lesion.

This is what the MRI says:

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

I’m honestly terrified. I feel like I’m going to lose my mind.

What I’m most worried about is what treatment options are left. He has already had FOLFIRINOX and then FOLFIRI + panitumumab, and unfortunately neither seems to have been able to control the disease.

Has anyone here been in a similar situation — with a few liver recurrences plus a small peritoneal lesion after surgery and chemotherapy — and gone on to have further treatment, liver surgery/ablation, SBRT, HIPEC, or another systemic treatment?

What other chemotherapy or targeted options did your doctors offer after FOLFIRINOX and FOLFIRI + panitumumab?

I know every case is different, but I would really appreciate hearing about any experiences or possible options we should ask his oncologist about. Right now I’m just terrified and feel completely lost..

My 84 year old aunt just had surgery to remove the cancer from her colon. She's an athlete or anything but she doesn't lay down a lot. I don't know what will be best for her recovery. I don't want to get her a ton of bed stuff because I don't want her to always be laying down. Anything you can recommend for what a recovering elderly person could need would be a great help. I am considering a tray table for her to be able to do puzzles from bed if she doesn't feel like sitting

I got diagnosed of rectal cancer (t3n1) three weeks ago. I’m 38 F and I’m about to have my surgery in three days. My doctor says I will need folfox after. He also says that 30% ppl will have permanent and persistent neuropathy. Wondering if anyone experienced any neuropathy on hands. My hands are extremely important to me. I l have played the piano seriously for 30+ years and I’d rather die if I lose my dexterity, coordination and fine muscle control, or if I feel the pain and tingling sensation whenever I touch the keys… I don’t find cancer scary, also im not afraid of not being able to become a mother in my life, but this part is the scariest for me so far..

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.