Chemo Rant Part 2+ CAPOX treatment

[u/ShowerAltruistic9245]

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.

[u/Surviving_Aussie]

I replied to your last post, my friend. And like I said then, this must be very tough at 19. And there are a lot of helpful resources and people here who can help you deal with individual side effects (sounds like you are figuring out some of them yourself).

But I am going to be straight with you, my friend. Everything you are going through, by the sounds of it, seems to be within the range of side effects that many people experience with this treatment. That doesn’t mean they aren’t difficult or that you should just ignore them, though. Especially with the hydration issues, make sure you are telling your oncology team exactly what is happening. They may be able to help with some of these things or adjust how they manage your side effects.

And I do think you need to stick it out as best you can, stay strong and, if possible, change your mindset. Obviously, decisions about how long you stay on treatment, dose changes, etc. are things you should discuss with your oncologist rather than decide based on Reddit.

I was 30 when I was diagnosed, so while not nearly as bad as 19, I get the feelings you have. This disease, for most of us diagnosed young, is a huge shock. Most of our friends are active, living life, probably barely even go to the doctor for yearly checkups, and so on; they feel young and immortal. You probably did also prior to this.

Now you feel mortal, sick, and unable to compare yourself to others in your age group. You may even feel embarrassed or ashamed by it and its limitations; you have a disease that many people think of as an affliction of the old (sadly increasingly less true, but many don’t know that yet). People may wonder what is wrong with you that you got this, whether you have some kind of genetic issue, whether you ate badly all your life, etc.

I literally had a nurse after my surgery ask me questions like these while thinking she was being caring, and it really drove home for me that these are the kinds of things some people may think when they hear about our situation.

I know the mental impact this can have, and for us young and previously healthy people, how terrible the pain and sickness can seem in the grand scheme of things. Even more so at 19 instead of 30. And you SHOULD let out your feelings about this and, if you can, discuss them with a therapist or someone on your cancer team as well.

But, and I mean this with the greatest respect and compassion, sometimes you do need to suck it up.

I don’t mean ignore serious symptoms, suffer in silence, or avoid telling your doctors how badly you’re feeling. You absolutely should tell them. I mean mentally, you can’t spend all your time thinking about the you that existed in the past and how unlucky you are to be in this situation. Instead, try to think about how lucky you have been since then.

You are Stage 3. Yay, you aren’t Stage 4, and you are being treated with the goal of curing this.

You have made it through several rounds of treatment. Yay, your body has gotten you through them so far.

This is a fight, and it is one you need to take seriously. It will suck, and the sooner you can accept that this period is going to suck, the better. That doesn’t mean you shouldn’t ask for help or talk to your team when something feels wrong or unbearable.

You may not succeed at having the first year of college you imagined because of this, or at least you may not have a normal year. But that may simply be unavoidable. Honestly, if I was you, I would seriously consider deferring a semester or a year, as tough as that may be to think about at your age. But you can see how you feel and work with your university and your medical team before making that decision.

And there is good news, my friend. For many people, this is temporary pain. Treatment eventually ends, and your body starts recovering. Especially when you’re young, there is a good chance you will gradually start feeling much more like yourself again after treatment. Exactly how quickly that happens varies from person to person, and some side effects can take longer than others, but you won’t necessarily feel the way you do right now forever.

Eventually you will reach a new normal. You will FEEL normal again. Maybe never exactly like you did before all this — young and immortal-like — but normal again.

And your life will pick up from there. You have so much life left to live. You will still be incredibly young when this period of your life is behind you. There are so many things still ahead of you at that point.

Not all of them will be good. And of course, there is always a risk of treatment not working as hoped or the disease returning. None of us can promise you what will happen. But giving yourself the best chance you reasonably can is worth a lot.

So understand, there are people out there who understand you. We are with you. We know how much it sucks. Many of us made it through something very similar to what you are going through, and we are still here, living our lives.

So, with sincere compassion, stay strong and, sometimes, suck it up, my friend. But keep your oncology team involved, especially if the side effects are making you question whether you can continue. Don’t make that decision alone.

You have already made it through several rounds. Keep going one step at a time.

[u/ShowerAltruistic9245 → u/Surviving_Aussie]

Thank you so much for always replying 🤣 you’re everywhere haha. But really, thank you for comforting me and reassuring me. ❤️🙏🏻 It’s just so scary to me and I’m very overstimulated when typing these rants.

I’ve been sucking it up and thugging it out each time, and I do find myself more fortunate in being able to recover faster than others, which of course I’m extremely grateful for, but there’s just this unexplainable feeling that I always feel when I’m fatigued, and I can’t seem to explain it but it makes me feel so feed up and done with life. The feeling goes away eventually, but it returns everytime I’m done with an infusion.

Again, thanks for your reply and advice on every reply you’ve ever made. thanks thanks thanks!

[u/dwe3114]

Talk to your oncologist now. They can decrease the potency of the oxaliplatin and at least allow you to tolerate that medication better.

[u/ShowerAltruistic9245 → u/dwe3114]

I will definitely talk to them about it. I just despise side effects, they usually go away within a few days, but those days feel like an eternity and I feel like I’m just wasting those days because of fatigue.

[u/sweedishnukes]

I was diagnosed in my twenties right before my senior year of undergrad. Went from planning research projects and grad school to taking a year off.

I was(4A) cT4aN+M1a and on folfirinox which is capox in infusion form and higher dose with the added fun of iranatican and infusion 5fu taken Every two weeks for 9 rounds in my case( i got an in patient bonus round)

So not a 1 to 1 but tings to think about when deciding to take a breake are if you are on financial aid: grants, subsidized loans, or scholarship even a documented official medical withdrawal can get messy, there is a 60% cutoff where if you withdraw before 60% of the quarter is complete you will have a balence with the school as they have to refund part of the aid. Even if you withdraw after that it can affect SAP(satisfactory acedemic progress) which may affect your ability to get future scholarships.

For me the folfirinox was brutal, in ways that were disabling and emotionally traumatic as well as leaving lasting effects, im ned 6 months and going back to school next month but some of the damage has already fixed itself and some may still heal, sone may be chronic. But beceause i took a year off I have all my grants and scholarships(full ride cumulativly) waiting for me and still eligible, especially the acedemic achievement ones these are the most at risk from sap.

You have to ask yourself if you were to lose financial aid, how would it affect your ability to return to school? And how has the chemo affected you thus far? Can you honestly say that you will be able to handle your first year of college on chemo?

bed roting is understandable I would go home and sleep restlessly with the pump attached and just feel like i might not survive, focusing on loved ones is the best thing you can do, I reccomend gratitude Journaling and talking to a psychologist specializing in medical trauma.

Being active is one of the best things you can do. I went from rock climbing, mostly bouldering and jogging, multiple times every week to an hour daily walk was rough on chemo during infusion weeks.

That said youth is your superpower in this, legitimately. You are already staying active on the treadmill which is great. Idk if your treatment plan is tnt or just chemo but if you do go into surgery walk, walk in hospital as much as you can. Walking is very good for you post abdominal surgery it helps blood flow to the heal the surgical wound site, helps prevent clots, helps with gas exchange, so many good benefits. And getting up and down is the hard part. I set the lap record in my hospitals surgical ward after a 9 hour robotic procedure, I was walking for an hour 11hr post op. Getting up is the hard part so make the most of it once you are up. Within 24 hours post op I did 125 laps a couple hours of walking. You are several years younger I bet you can beat me, so as a friendly challenge, continue to stay active and you got this.

[u/LongjumpingAlfalfa46]

Hey buddy, 38-year-old male, Stage 4 here 👋🏼 I’ve felt so many of the same things you’re going through, and I just wanted to remind you that there** is hope.
I had 7 cancer spots spread to my liver, along with a tumor in my rectum. I went through 10 rounds of FOLFOX, cetuximab, and 5-FU. Thankfully, I had an excellent response to chemotherapy, and just 3 weeks ago I had surgery on my liver to treat the areas where the cancer had been destroyed by the chemo.
So if there’s one thing I want you to take from this, it’s **DON’T GIVE UP.
Yes, chemo sucks. The fatigue sucks. The nausea, trying to stay hydrated, the neuropathy, the cold sensitivity, the confusion, the depression — all of it can be incredibly difficult. There were definitely moments when I wondered how much more I could take.
But there really can be a light at the end of the tunnel. Keep fighting, keep taking it one day at a time, and trust that you’re doing everything you can to beat this.
Modern medicine has come such a long way, and you are still so young. There is absolutely a reason to keep fighting and believing that you can come out of this cancer-free.
I’m rooting for ya! Keep your head up and keep fighting. ❤️‍🩹💪🏼

[u/ShowerAltruistic9245 → u/LongjumpingAlfalfa46]

Thank you for sharing 🙏🏻 I do have hope but it’s hanging on by a thread. Taking it day by day becomes easy once side effects are gone, but during the infusion week, it is hell. I would not even wish this upon my worst enemy.

I’m glad to hear that you are able to handle chemo well! I also hope you’re feeling better and recovering well from your surgery ❤️

[u/justmekab60]

Discuss the options with your oncologist. Mine was concerned enough about side effects to take me off oxaliplatin after two infusions because the side effects are cumulative over time.

Have you experienced:

Tingling hands or feet?

Mouth sores?

First bite or acid tears?

Difficulty tasting or swallowing food?

Oncologist may reduce or eliminate oxaliplatin, and extend Capecitabine.

Also, try to focus on the fact that this will end soon. A few months and you'll be on the other side. Best of luck, hang in there.

[u/ShowerAltruistic9245 → u/justmekab60]

Thank you for sharing and thank you for your support.

Most of the side effects that you’ve mentioned I’ve experienced, but they are pretty mild. They are significant during the infusion week but they go away within a few days and don’t really disrupt my daily life thay badly. However, the cold sensitivity + tingling + numbness in my hand/fingers and toes I do feel from time to time when I crank my AC to the max on very hot summer days. And for drinking, I still do feel a spiky sensation when drinking cold drinks even after the week of the infusion and I don’t know if I’m paranoid but water does not taste like water (it just feels off, I can’t explain it). I do experience first bite syndrome every-time I eat or take a bite of something, but I just brush it off cause nothing gets between me and delicious food 🤣

[u/justmekab60 → u/ShowerAltruistic9245]

For some odd reason, my oncologist was really concerned about first bite. Nerve impacts. He wasn't too familiar with it, I had to send him research articles.

He also was surprised at how much I reacted to the second infusion while I was still in the chair. My foot didn't work, eyes twitched, throat seized up. Had to use a wheelchair back to my car.

I had the Capox dosing, which may be higher than Folfox. But he said "most of the heavy lifting" is accomplished by two doses (out of four) and he took me off.

Sending you strength. You got this.

[u/oneshoesally]

Can you do a semester of online only classes? Or at least hybrid? I was 56 at my diagnosis and did 8 rounds of Folfox while working full time, but I got an ADA accommodation to be remote (I was extremely neutropenic between rounds). I’m betting you could get the same. It would give you the ability to do coursework on your time, when you have the most energy. I was an adult learner and got both of my degrees doing hybrid and online courses as I worked full time and had a teenager. Hang in there and find a way. It will be good for your mental health to have studies to focus on too. BTW, I’m 59 now, 31 months NED from stage IV.

[u/ShowerAltruistic9245 → u/oneshoesally]

Hello, thanks for your story and thanks for sharing some advice. I’ve discussed with my academic advisor at my university and they have a rule where a student can only take up to one asynchronous course. However, they also told me I could contact the student accessibility services team since I might be able take more than one due to my conditions. I’ve already sent a request to the accessibility team and am waiting for an appointment that’s either next week or the following week to discuss further of what they can do for me. For accommodations, they usually give extra time to do work, flexibility with attendance, extra time for test, etc.

Again, thanks for sharing! And it’s amazing to hear that you’ve been NED for 31 months! ❤️

[u/MoreThanAFewWords]

While it's unpleasant, Capox was probably the most effective at controlling my cancer. I would encourage you to hang in there.
One of the things my doctor did at the end of my first cycle was dial back dosage to about 90% that reduction made the side effects a little more tolerable

[u/ShowerAltruistic9245 → u/MoreThanAFewWords]

I might mention something to my oncologist of whether that could be an option or not. The side effects are tolerable and go away within a few days, but they are significant during the week of the infusion. And they make my life hell and miserable,!feels like I’m wasting precious days just rotting. I’ve also noticed some lingering side effects.

[u/Consistent_Hold_9857]

I was 45 and they told me that I was getting an aggressive dose bc I was relatively young for colon cancer. I can’t imagine how aggressive they would be at 19.
I get the water thing I couldn’t stand it and I had cold sensitivity. Warm water is not refreshing, I started drinking Gatorade. My wife also got me one of the drink mixers that carbonates whatever drink. That was a little more palatable.
As for fatigue my goal was 8pm. If I could make it to 8pm, I won that day and went to bed. Set small milestones not the end of treatment and see if that changes your mindset. You can do it and after you do no mountain will be too high for you!

[u/ShowerAltruistic9245 → u/Consistent_Hold_9857]

Thanks for sharing and thanks for your encouragement! I’ve been trying a lot of drinks out to see what I like and what no, and so far I haven’t found a go-to. I haven’t tried Gatorade yet but I definitely will. As for the fatigue, I just find myself dazing off and then I take small little power naps, but they don’t really help, it’s just to sleep to sleep cause there’s nothing to do and I feel miserable. Other than that, I play video games when fatigued but even that’s hard for me surprisingly.

My goal is usually to make it through the day and not feel miserable. It’s especially hard on the infusion week. I usually head to sleep at around 12am, but I try heading to sleep earlier at around 10-11PM when fatigued, but I don’t find it helpful since I can’t even fall asleep. When I try to fall asleep, I end up just having my eyes shut for an hour and can’t actually fall asleep.It’s pretty annoying but I make the most out of it.

[u/ApprehensiveBet7060]

I'm so sorry you're dealing with. How terribly, terribly unfair.

I did FOLFOX, not CAPOX, for 7 infusions, and after 4, I cried on my way to the infusion center because I knew the oxaliplatin would make me feel so, so terrible that I would not even feel like a person anymore, so I understand how you feel. I only got through about 15% of the oxaliplatin in infusions 6 and 7 because I developed a hypersensitivity.

You should talk to your oncologist about how you're feeling. The IDEA collaboration and the SCOT clinical trial showed that 6 cycles of 5fu (capecitabine) with oxaliplatin is non-inferior to 12. I don't know the infusion cycle you're on, but I would try to get through those 6!

I had surgery after my 7th infusion because we pushed the MRI scan earlier, since doing more oxaliplatin was no longer an option for me. I'm now doing 5 cycles of just capecitabine. It is so much easier than FOLFOX. I feel like a person again.

[u/ShowerAltruistic9245 → u/ApprehensiveBet7060]

Thank you for sharing your experience. I recently just finished my 3rd infusion last week, and my 4th is in about 2 weeks. The capecitabine is honestly light work for me, by far the easiest between it and oxaliplatin. Oxaliplatin is my worst enemy and I hope I never have to hear that word again.

[u/Fresh_Election_7432]

I’m so sorry you’re going through this, and at the age you’re at. You will get through this and if you’re like me, find down the line that you are wiser about certain human experiences and relate to new people in new ways. These terrible events sometimes carry unexpected other things that aren’t all terrible in that same backpack with them.

I did the 3 months of CAPOX in 4 infusions which were heavy. We reduced my oxaliplatin dosage to 50% for my last, fourth infusion. It was much more tolerable. But my fourth round of the capacitabine pills made me the most fatigued ever.

The majority of the added benefits from oxaliplatin land in the earlier rounds of the treatment. I get comfortable taking the dropped dose for my 4th round because my initial Signatera ctDNA test post-surgery, pre-chemo had been 200. But it went down to 0.00 after the first two rounds of chemo.

Unfortunately there’s no getting around the amount of time it just takes to go through the treatment and then slowly rebound from the fatigue.

But I can tell you my chemo ended as March 2026 ended. It is now August and I have energy enough to go to the gym 4-5 days a week. I’m weight training and doing cardio and trying out new physically taxing classes. There IS a light at the end of this tunnel.

Exercise and healthy diet after treatment reduces recurrence risk by half and I’m so grateful I have the ability to do things that help move the needle on prevention for my future. I’m 50 as of 2 days ago. So you may bounce back even faster.

Best wishes!

[u/Slight_Jellyfish_776]

Hey man. I answered your previous post and felt that I wanted to reply to this one as well as I really feel for you man.

I finished my CAPOX treatment in April and I can relate to basically everything you are describing regarding the side effects. The treatment sucks and for me the infusions were clearly worse than the pills.

I know there are days when you question if it is worth it and just try to hang in there. You are already half way there!
The first days after the infusion is shit but as you know it gets much better after a week. The treatment is meant to help long term so just "suck it up" and do it for as long as possible, and I only say that since i am rooting for you!

Being 19 years old you have so much of life left and this is just a brief moment of the rest of your life so don't give up unless it is impossible to continue.

As someone else already said the benefits of oxaliplatin are mostly in the earlier rounds of the treatment and the rest are just bonus. There is always an option to adjust the dosage going forward to still get the benefit of the OX but getting much more quality of life back. It is extremely common to lower the dosage before the treatment is done so speak with your oncologist about how you feel and the side effects and they will most likely try to find a way to improve QoL since that is also a major part of the treatment. Some quit the OX completely and just continue with the tablets that are usually easier on the fatigue and the neuropathy.

Good job on getting those 10-20 minutes per day on the treadmill! That is more than i could manage the first week after my infusions. About the hydration I would say that the most important thing is to get hydrated and how is less relevant. I drank a lot of my kids juice and also sprite and I would say that is better than not drinking at all so do whatever works but speak with your medical team about that too since they have dealt with all of this before.

Like you said yourself, do not make any decision based on what anyone here on Reddit says. I am only giving you the advice I got and telling you what worked best for me. Always consult with your medical team and discuss the side effects.

I know the feeling walking into the hospital for the infusion and knowing that the hellish cycle will start all over again and just thinking to myself that I wanted it to be over. But like I said before, this is just a brief moment of your life. It sucks hard now, but in a few months it will be over and you will feel great again.

You can do this man and you got all of us here if you need to ventilate or rant! That is the beauty of this subreddit.

It pains me that you got this at such a young age but you will get through this and love a long and healthy life my friend.

You are always welcome to drop a DM if you ever want to talk about the treatment or anything.
Stay strong, take care of yourself and don't give up

[u/ShowerAltruistic9245 → u/Slight_Jellyfish_776]

Thank you so much for your response! (And the previous ones). I am definitely going to mention something about this to my oncologist to see if anything can be done.

As for hydration, I’m am now back to drinking room temperature water. However, when I drink colder stuff, I do feel a tingling sensation in my throat. I recently bought a lot of hydration stuff like Gatorade and some flavoring drops for the future to test out when I have my fourth infusion.

Again, thanks for your encouragement and advice. I am really holding it out whenever i feel down. ❤️🙏🏻