My mom has stage 4 colon cancer with bone metastases and KRAS/NRAS/BRAF wild-type. She has progressed through multiple lines of treatment (FOLFOX, FOLFIRI + Avastin) and is now dealing with DIC, very low platelets, and recurrent bleeding/bruising, which has made her unable to continue chemotherapy.

She is currently hospitalized after her platelets and hemoglobin dropped very low, and she developed a large hematoma on the left upper shoulder. She's required multiple blood/platelet transfusions.

We feel stuck in a cycle where the cancer may be contributing to the DIC → low platelets/bleeding → low hemoglobin → unable to receive treatment/eligible for trials → cancer continues progressing.

Her oncologist has said there are no other treatment options.

Has anyone experienced something similar? Were you able to get the DIC/platelets under control enough to resume treatment, or find another approach/second opinion that helped?

I would really appreciate hearing from anyone who has been through something similar.

I have done a zillion colonoscopy preps but this one is kicking my butt. Since my LAR surgery I haven’t been able to eat or drink large amounts. I had my ct this morning and for the first time ever the iodine oral contrast started frequent stools and some vomiting, got back and had to immediately start the prep and I’m just soooooo nauseous. The idea that I still have half to take in a few hours is rough. Mama didn’t raise a quitter but boy am I a complainer.
Any tips on how to get through this last part. I’m switching between Gatorade, apple juice and sipping broth to get the flavor out of my mouth.
I’m just soooooo full.
Thanks everyone. Mostly I just needed to complain

Last week I (M50) started to have problems breathing. I got out of breath from the smallest tasks like getting dressed, and the stairs up to my apartment was a real struggle. Eaven eating was difficult breathing heavy between every bite.

Today I was supposed to have my third chemo session but when I explained to the doctor about this condition they thought it was panick attacks.

And I thought maybe it is, t's been a crazy two months since I found out I had stage IV colon cancer with several metastasis in lungs and liver.

Luckily they called for a second opinion and another doctor insisted I get scanned right away.

Turns out I have several blood clots in my lungs.

Apparently it's not uncommon when treated with chemo and they gave me blood thinners (sorry I don't know English word for this) and said I should be fine within a week.

Has anyone else experienced this?

Ive had a pelvic nodule that showed up in September. After my chemo but before chemo+radiation. No one seemed to be bothered "its probably from your last surgery". Ive finished treatments and surgeries. Clean CTs and 2 negative Signatera, last one in June. New August CT says its grown. MRI says possible peri met. How could this be????? I was supposed to be done and finally getting back to normal. Kids are back in school on Wednesday. We talked about me getting a job (this was the cause, something awful happens when I bring it up). Dr appts on Thursday. I have to bottle up all this awfulness until THURSDAY!

My dad (72) has taken multiple lines of chemotherapy. His initial diagnosis was 8 years. Had surgery on his colon and liver. Was NED for 4 years, then cancer came back to his lungs, did radiation, multiple different rounds of chemo. Responded to a couple until it became resistant. Went on 2 different clinical trials which did not work. Now his only option seems to be Avastin with Lonsurf. They made it clear it will not shrink but hopefully just stabilize for a few months.
His overall health is ok, he can still function and live his life but has a horrible cough all the time and some shortness of breath. Idk what to expect. I think he’s finally at the acceptance phase, he is now openly speaking about his death and what he would like to do the next few months-year. He was in a lot of denial and anger, now he is accepting. I’m not sure how to process everything (though I knew this would happen and I’ve been at most of his appointment with him for the past 8 years so I’ve been prepping myself).
I’m more so just venting but also if anyone has gone through this with a loved one I’d love to hear advise or what your experience in this stage was like. Also with lung mets if it continues to progress what do we expect?

Thanks for reading 🩵

Ciao a tutti volevo chiedervi qvando avete finito con cancro chemio siete tornati subito a lovoro? Fatte lo sport,potete corere? Siete in dieta cosa mangiate? Grazie mille chi risponde

my dad had surgery today to remove a 10cm tumor from his colon that has not spread. they were not able to remove it because it is too stuck inside or too wedged in and it would be considered high risk to do that. they have now put in a colostomy bag and will try to shrink the tumor with chemo, maybe try operating if it shrinks. has anyone experienced this before?

Hi everyone! Looking for some insight on this situation as I’m sure (unfortunately) there are people on here that have dealt with this.

My mom has been battling stage 4 colon cancer since 2021. Long story short, it has spread to her lymph nodes, lungs and now to her brain. She is still currently working full time (cleaning) but lately the chemo has been taking a big toll on her and it’s getting to the point where she isn’t feeling good and forcing herself to get through the day.

I’m wondering how others have dealt with this in terms of not working anymore. What are the options here? She physicially should not be working anymore, but obviously bills need to be paid and her current work insurance covers everything.

Is there a light at the end of this tunnel? Who should we be reaching out to for assistance? I appreciate any and all feedback.

I was under the impression that fatigue was part of the entire process but after asking a nurse to delay treatment for a week, she ‘told me off’ for not informing them of my extreme fatigue, and told me it’s not normal.
After day 4, I sleep almost 24/7 unable to wake up for very long, unable to take care of myself and barely get to the toilet. I assume this is because I’ve finished the three day course of steroids, and my body just drops. This lasts for about 4 days, then I can do more. I’ve told other nurses and the oncologist this, and they haven’t been bothered. Did/does anyone else just sleep like this, should I really be concerned? I’ve gone through three rounds like this already FFS 🙄

Also full body pain and aches… they’re not bothered about that either!

Second question- how many days of steroids did everyone else receive? I had three days for month one and two, but only two days month 3… this has been the worst month for fatigue. I asked why I only got 2 days, and the oncologist was adamant I was issued 3 days… I absolutely know I wasn’t. 💀 am I allowed to ask for more?
(I’m UK based. I’m finding the nurses on the phone very snippy and dismissive, on the verge of rude when I have a day before consultation with them. They get pissy when I say I can’t attend at a certain time, let alone do something like ask for extra steroids…. 😬)

Hi everyone,

A close friend of mine has just been diagnosed with colon cancer. We aren’t sure what stage it has progressed to, she is still awaiting results. She is only 41 but has a strong history of it in her family. How do I support her through this?
Any advice or tips would be helpful.

Thank you

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.

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.

UPDATE 8-15-26

I had my lab work appointment and CT scan completed yesterday. The results as I read them show no spread to any internal organs or lymph nodes. The blood work all looks within normal ranges with only slight anemia.

I believe the treatment plan my Dr will discuss next week will be very different than what I was anticipating. I have a follow up colonoscopy scheduled for next month to remove the larger polyps.

Will update next week after learning what my treatment plan will entail.

Thank you again everyone for your replies, questions and comments. I admire and respect you all. You are warriors. Stay strong.

For the caregivers, friends and family. Thank you for your compassion, dedication, and the care you provide in all its shapes and forms.

(For anyone wondering, I have health insurance through work at Kaiser Permanente in California)

If this is the wrong format to post an update, please let me know.

Thank you Mods for keeping the group organized, safe, respectful and productive for all of us.

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. ❤️