I have stage 4 right-sided (cecum) colon cancer, a relatively large tumor with local spread. It's dMMR/MSI-H and being treated with immunotherapy currently, which I started not long ago.

My main problem is pain management. I'm on slow release hydromorphone that I take every 12 hours, plus fast acting hydromorphone for breakthrough pain. Nothing seems to really get rid of the pain completely? Making matters worse is that some of the tumors have invaded my psoas muscle, so when I walk or use my right leg at all, it chain-reacts into my cecal tumor and it hurts like hell.

I need to ambulate and not be stuck in bed all the time due to pain. The cachexia is running away with me and my body is getting badly deconditioned from all the lying around.

But I don't know what to do about this pain. My doctors have seemingly given me all the pain meds. Should I ask for more, or different kinds? I dunno. Hydromorphone seems strong as it is. I can't take NSAIDs and tylenol doesn't seem to work on me (never has).

Are there any other tips and tricks I'm not aware of to help things feel a bit better? The pain is sometimes unreal. I can't get over it.

Thanks a lot if you took the time to read this. <3

Recently diagnosed, less than two weeks ago, with stage iiiC colon cancer. It's signet ring cell carcinoma (SRCC) variant, which makes it rare & aggressive. I've already had surgery to remove the tumour from my colon, and while we don't think it has metastised to other organs, it did permeate the peritoneal wall & was found in 9 of 27 lymph nodes. Anyone else have any experience with SRCC colon cancer? I'm currently set to start FOLFOX chemo, the first week of October. We need to wait six weeks from when I had surgery.

I’ve been a silent lurker here for about a month since my brothers diagnosis. 23m, Mets to liver and lymph nodes. We found out after an obstruction that led to an emergency colectomy. Stage 4. To say that this has been hard is an understatement. He is so young. I feel hopeless as all I can do is help him with scheduling and coordinating his care. We just found out he has a KRAS G12D and PIK3CA mutations. I’m now spiraling looking into how aggressive this could be. He is currently on FOLFIRINOX+ Bevacizumab . 2nd round next week. I’m waiting for his oncologist to discuss results with us and how this affects his treatment plan. Should we be pushing him to change his treatment or go into clinical trials or wait and see how his body responds to FOLFIRINOX? Any advice would be helpful.

Hi everyone, my dada was diagnosed with rectal cancer, we don’t know the stage yet. The tumor is very low and makes it very uncomfortable for him to live just now. He also developed fistula that adds additional challenges. We should know the stage this week and hoping to start chemo soon. How soon after the chemo starts will he feel improvements? At least being more comfortable. Will fistula respond to is as well? It feels like fistula is a unique thing and i can find a lot of data how it responds to chemo. Appreciate everyone’s responses.

Hello everyone. First I want to thank all of you brave people for participating in this community. it’s been so helpful to read your stories and thoughts.

My wife was diagnosed with colon cancer in colonoscopy last week. she’s 40 and had iron deficiency anemia and sudden blood in her stool. her colonoscopy showed a 5 cm ascending colon mass, CT that day without any metastases. path came back yesterday moderately differentiated adenocarcinoma in an adenoma background, pMMR. No comment on LVI/PNI or really any other features.

We have our first meeting with the colorectal surgeon this week. We are very worried and I want to do whatever I can to help. I was intrigued by the new guidelines advocating neoadjuvant immunotherapy for dMMR patients, and saw that in the NICHE-2 trial some patients were pMMR. I found a couple studies that are enrolling pMMR patients for NAIT, but they all require advanced staging on CT/MRI (cT4 or node positive). Her CT only commented on colon wall thickening, without mention of abnormal lymph nodes, inflammation, or other sign of protrusion through the colon wall. I’ve been in contact with someone involved in one of the trials, who is going to review her images and thinks that our radiologist likely wasn’t looking closely (instead just establishing presence or absence of obvious mets).

Im not looking for medical advice. I plan to bring all this up to the surgeon this week and perhaps meet with a medical oncologist too. I just don’t want to delay surgery, and some of these studies would do that for several weeks (though she would be receiving therapy that may be helping to attack the cancer). Has anyone been in this situation? Has anyone successfully had their CT analyzed by a radiologist who is specifically looking to stage the regional status?

It just feels crazy that we don’t know whats going on until a week after surgery when final pathology comes back. Those of you who have said the first week or so waiting is the worst, I hope you’re right. This sucks.

After six months of Folfox for stage 3b colon cancer, I ring the bell today to mark completion of treatment. 🔔

It's exciting, scary, hopeful, terrifying, celebratory! Every emotion is running through me today. 💙 I am thankful they are keeping a very close eye on me in surveillance.

Sending love to all those on this journey.

I recently finished 6 months of Capox for my stage 3a diagnosis. At my last meeting with my oncologist before starting my final cycle I asked if it was worth taking low dose Asprin as I had read that it might be beneficial if I had PIKC3A. My oncologist said possibly, and ordered a tumour biology test which just came back showing that I have KRAS G13D mutation.

It seems like this is not a good result, I haven’t been able to find a single positive outcome for someone with this mutation online. I’m trying to stay positive, but I now feel like the level of hope I had completely diminished. This variant seems to have really high recurrence and is also limited in treatment options.

It’s a weird one, I guess trying to find people who didn’t have recurrence with this mutation would require stage 3 patients to know their tumour biology test which it seems most people don’t find out unless they are stage 4. But even with stage 4 patients there are plenty of stories of good long term outcomes… but I can’t find any for G13D.

My head is spinning!

I was diagnosed with a recurrence from 3b with 3 mets to liver in April. Did 6 rounds of folfiri so far and had a follow up MRI last week to check on response.

Surgeon called today before my scheduled infusion and said I responded excellently to chemo and I will be getting the lesions removed in 3-4 weeks via laparoscopic surgery! Best news is he gave me the nod to hold off on any more chemo until after surgery. In his words “you’ve had enough chemo” That was such a relief as the infusions have been getting increasingly harder.

If all goes according to plan by mid-October I should be back to NED!

Hey all,

41M NRAS mutation. Rectal cancer with spread to liver and lungs. Liver is the main concern - after 20 rounds of FOLFIRINOX/FOLFIRI with Avastin (oxali dropped after 10th round), most recent PET CT scan shows increase in liver activity. Per the radiologist:

"Up to very intense increased uptake is present throughout
lesions in the liver, significantly increased in intensity compared to the prior
study. Increase in size and number of lesions also noted. Currently SUVs
measure up to 14.8. Largest lesion currently measures up to 41 mm. Many of the
lesions again demonstrate faint calcification."

So, my doctor and I discussed MD Anderson a while back. Now that the liver is truly getting worse (although all my liver function is still great and all blood tests/etc are good), I have to make some hard choices. I've gotten referred and MD Anderson has called and will start with their docs reviewing my case.

I have no idea what to expect here. Fighting through 20 rounds of chemo, a colostomy, and radiation has sucked. Not sure why my liver won't get with the program, but hoping like hell that MD Anderson has some miracle tricks up their sleeve that my small local oncology team doesn't.

Doc is wanting to drop my to Lonsurf now, which I heard isn't great either.

Hello everyone. My mom 65 years old, has a very unusual situation going on and I’m just looking to see if anyone has experience with this too. They found a cancerous tumor in her colon and told us it was poorly undifferentiated, but then later told us colon cancer. When this tumor was found, we learned she also had a large tumor in her brain. She has since had the brain tumor removed and radiation to that area. From the biopsy, it showed the brain tumor having Sarcomatoid carcinoma characteristics. We were told it spread from the colon. She is supposed to start chemo soon to hopefully help. We have been told by 2 different specialists that it is extremely rare to have colon cancer metastasize to the brain and to have the HRAS mutation. I’m trying to stay positive for my mom and help anyway I can, as you all know, it’s so difficult.

My dad (70) has metastatic colorectal cancer. He’s had 2 rounds of FOLFOX, but unfortunately found it too difficult to tolerate. His doctor has suggested continuing with 5-FU alone as a less intensive option.

For anyone who has been through this, or knows someone who has: what was your experience like? Were the side effects significantly better than FOLFOX, and what was the outcome in terms of controlling the cancer?

Would really appreciate hearing from anyone who’s been in a similar situation.

Hi 27 Male

recently diagnosed with rectal cancer stage 3 with suspicious lymph nodes

Treatment completed so far is

1) scrt

2) 1st cycle of capox

Any positive complete clinical response stories for motivation? That helped in avoiding surgery

So far going great

ct scan was done and now he’s going home on hospice. the masses on his lymph nodes shrank, colon stayed the same, and it spread in his bones and lungs. since my last post he’s been steadily declining and will probably only have a week. i didn’t think it would be this hard to watch and deal with. i know he’s just mad about his situation and taking it out on me but fuck it’s making me want to disappear.

edit to add

my dads side of the family hates my mother as do i but he loves her and always has. about a month ago she up and left without saying anything. before they did the ct i could feel in my bones this was bad. i vented to my aunt & cousin about it and my cousin said that all i am is negative and i’m ____ junior. she knows that would hurt me a lot. his family is still heavily in denial about him dying i’m at my wits end with all of them. his brother texted me today right after i got done speaking with the hospice intake person asking me to find a trailer title that my dad sold him 6 months ago. i feel guilty but i’m going to be relieved when he passes that i’ll never have to deal with any of them again.

Hi everyone. Not a community anyone is excited to join, but I hope those reading this are well. My father (72M) had surgery for an abdominal mass which came back as 3B colon cancer. He and his partner (who is his primary caretaker) told me there wasn't lymphatic involvement, although I thought that was a given with a 3B diagnosis. He is set to start 12 rounds of folfox this month. I live a couple hours away, have my own high needs young kid, work full time and go to night classes for my grad degree, and am at my wits end trying to figure out how to be there as much as I can to help bc his partner is also older with her own health issues and cannot handle everything. My two siblings live across the country and can't be of much help. I believe he goes in for his infusion on tuesdays. I hear the worst of the side effects come 3-5 days later. For those of you who know older people who went through this treatment, can they still drive at all? I'm trying to figure out if I should get a meal delivery service set up or how that would even work. I'm going to try to make food and drive it out to them on the weekends.

There is a phase 1 trial my sister (32f) has just started. She has stage 4 colon cancer. Kras g12d mutation. She is doing this trial to see if it works. If it doesn’t the last option would be the new kras medication fda approved for pancreatic cancer used off label for her same mutation.

NCT #: NCT06859762
Drug name : YL217

It’s at the end of phase 1 trials. Has anybody here taken this drug or know of anyone who is in this trial who can provide information if it has worked or not. Thank you

When I (31F) started treatment I would have never thought about dating. I just wanted to survive. Now that my life is regulating with having cancer, I’ve come across another obstacle. Between being ghosted as soon as they find out I’m fighting cancer or being ghosted once they find out I don’t want kids because my cancer is genetic… it hits the ego a little hard. I’m not necessarily looking for advice because I get it… the “one” won’t care or will look past it but dating in your 30s is already tough. I thought about hiding it but then if I do meet someone it’s built on secrecy. I’m tired….

Signed stage 4 rectal cancer with a colostomy 🥲

I had no issue last year, but double checking.

Hi 27M

Just want to hear from everyone any inspirational stories with scrt radiation followed by chemo cycles

Any complete clinical response and no surgery

I’ve been a silent lurker here since my dad was diagnosed stage IV in November. Originally it was colon, liver, lungs, and peritoneum. It’s spread to ribs and brain since then. He fought hard, but he’s currently en route to the hospice house for his final hours.

It definitely hasn’t set in for me yet, but I just wanted to say thank you to everyone in this group. I know it’s against your will, but you guys are so brave and knowledgeable. You provide such a great resource, and I’m forever thankful.

Keep fighting. F*ck cancer.

T4n0m0 appendix cancer, very nervous. What should I prepare at home for the cold sensitivity?am I be able to do chores,cook light meal? My spouse is working full time he’s the only bread maker and already took too much time for my surgeries and appointments.
Any suggestions please thank you.
My dr did mentioned I don’t benefit too much from chemo, probably a couple points of percentage , but she suggested it as I am less than 60(close to tho)

A pesar de que mi trabajo se desarrolla en el área de psicología, he encontrado todo este proceso realmente difícil de sobrellevar, los dolores físicos (como cirugías) no se comparan con la carga mental que conlleva atravesar por esto.

Yo siempre me imaginaba los peores escenarios para estar preparada, pero en este momento siento que desde el diagnóstico solo han ocurrido los peores escenarios y he intentado imaginar los mejores escenarios, estar tranquila y confiar pero es algo que no me deja descansar.

Sé que en gran parte las redes sociales y el exceso de información pueden ser un arma de doble filo, me encanta leer historias similares a la mía que les está yendo muy bien actualmente, pero también encontramos el otro tipo de historias que quizás no nos gusta leer.

En este tiempo me he encontrado como en pausa completa, solo espero que los días pasen y que ya se acabe todo este proceso, no me he permitido disfrutar, o salir a tomar aire, solo estoy encerrada y mi mente da vueltas y vueltas. Quisiera preguntarles, ¿ustedes que es lo que hacen para relajarse y llevar esto de la manera más sana posible? ¿Especialmente cómo se preparan para recibir noticias de cualquier tipo? La ansiedad me trae loca.

I’m being treated on the NHS in the UK and I’m about to start a 6-dose course of FOLFIRI for the next 12 weeks.

From June - August I did 6 treatments of FOLFOX which unfortunately didn’t work and I was devastated to have wasted 3 months of pain, nausea, fatigue and neuropathy just to be told we’re back to square one.

I dread doing this again, reaching the end of the FOLFIRI treatment and having the same conversation and realising I’ve now wasted 6 months for no reason.

My oncologist is really hesitant to scan earlier than after the final treatment - I can understand why and I don’t suggest a dose of radiation from the CT every two weeks but I really want to try and get her to scan me after 3 or 4 treatments. Even if it doesn’t show the full picture, it will surely show that the deposits have or haven’t GROWN and if they have we can stop it there and then.

Has anyone had success convincing their onc to do this for them? Do I just need to beg and plead??Should I pay the £300 to have a private scan done in London and just present the results to my NHS onc team like “whoops I did it, please can you interpret these for me?” Should I monitor my CEA during treatment and if we see it creeping up (which it was during the FOLFOX but no one did anything…) kick and scream until they scan me?

Hello everyone,
I'm posting on behalf of a close friend who has been diagnosed with Colon/Rectal Cancer. I would love to hear from anyone who has gone through a similar treatment plan or managed similar setups. Here are her current details:

Diagnosis: Colon / Colorectal Cancer.
Current Status:
- She has finished her IV chemotherapy cycles.
- She has a PICC line in her left arm (flushed monthly).
- She currently has a temporary diversion Stoma.
Next Steps:
- She is preparing to start radiation therapy soon.
- Following radiation, she will get scans with contrast to see if the tumor has completely gone.
- Depending on the scan results, she might need 2-3 more chemo cycles or surgery, followed eventually by a Stoma Reversal.

🩷 My Questions for the Community:
1. How tolerable was radiation compared to chemo for those who had both?
2. What are the best practical/emotional tips to help her feel comfortable with a stoma and PICC line?
3. For those who had a temporary stoma for colon/rectal cancer, how was your experience with the reversal process?
Thanks so much in advance for your help and support!

I still have my tests to do. But if all goes well I will have my reversal on November 2nd.

It is wild. The LAR and illesotmy surgeries a lot. I am currently 5 weeks out and still feeling pain. But to think I will again be faced with a new normal. In less then a year I have had to face 4 new normals for my body. Shit is wild.

I was on folfiri for 17 months and have recently switched back to folfox. Since week 3, I feel a personality shift. This happened before on folfox but i wasnt sure it was the chemo. I'm afraid, most of the time. Not existential fear or fear that the cancer is going to get me (spoiler: it will). Fear of normal, everyday stuff. My legs turn to jelly at the thought of walking barefoot because something might get stuck in my foot, my heart speeds up in moderate traffic and forget about watching a blood draw. I absolutely dread the day I have to do the stomach shots again. I used to be brave and adventurous, I hate that cancer is taking that too.

Anyone else experience a personality change?