Oxaliplatin is no walk in the park, advice for CAPOX regimen?

I had FOLFOX (oxaliplatin and 5-FU) for an atypical colon cancer dx. The protocol was 12 rounds over 6 month period—so chemo infusion every other week. I had a port placed in my chest. I have tiny veins and as much as I hate the port (it’s not really that bad or noticeable), it makes lab work easier on me and health care person/s.
First, best advice: GET HYDRATED AND STAY HYDRATED, before and after chemo!!! Room temp water is your friend.
My treatment worked like this: Day of - IV pre-chemo meds: Emend, ondonsetron (both for anti-nausea/anti-vomiting) and a steroid (can’t remember name—but it prevents allergic reaction. Does not come with same drowsiness as Benadryl, sort of delayed fatigue—and did not cause “moon face.”). Make sure you’re getting pre-chemo anti-nausea meds and also a prescription of same to have at home. I did have nausea, but did not get “the pukes.” Take the medicine!
During entire 6 months of chemo, I was unable to tolerate ANYTHING cold or even chilled —water, smoothies, yogurt, etc. That part of treatment was really (really) frustrating.
I don’t know if this is part of your treatment but here goes: After oxaliplatin infusion came the 5-FU. A long IV tube was inserted into my port which was attached to a pump that infused 5-FU for 48 hours. The pump is about the size of a large transistor radio. I wore the pump in a fanny pack because the shoulder strap the pump came with aggravated my neck and shoulders. The pump was somewhat annoying to wear but tolerable. I’d go back to clinic on “day 3” to return/remove pump.
My oncologist said the 48-hour pump treatment has less toxicity and side effects, and is more easily monitored—rather than oral pills of same.
The first several rounds weren’t too bad until day 3 and then I’d totally crash. I called it “chemo-flu.” Slammed with fatigue, queasiness, maybe diarrhea; just felt like c-r-a-p. I was vigilant about taking anti-nausea meds. Take them before nausea sets in! Ondonsetron (Zofran) is very constipating—but that offset some of diarrhea side effect.
I ate a very restricted, bland, light diet. Advised to eat nothing uncooked or raw. Nothing sounded good and my appetite (and mood) were very changeable. Eggs, toast, chicken soup; broth—ew; crackers pretzels, white rice, room temp apple sauce—ew), Memorial Sloan Kettering has a great website with a ton of info—including diet and recipe recommendations. As advised, tried to drink as much water as possible but it was difficult; felt lousy on a queasy stomach. The nurses especially encouraged hydration, so do best you can. Strangely, craved and was able to tolerate Trader Joe’s almond or peanut butter-filled pretzels. My oncologist said not to worry about balanced diet choices during chemo treatment—more important to get calories any way you can take them. (And he loves the TJ’s pretzels as a good snack choice!) The food thing messed with my head because I’ve always really been into healthy diet and cooking—but that had to be put on hold. Try to remember: this is temporary!
During my week off of chemo, one day I’d go to the clinic and get IV hydration. Anecdotally this supposedly helps reduce side effects. I can’t say it actually helped because can’t compare to not having IV hydration during treatment—but I did it regularly. Ask your team?
By round 4: mild but constant neuropathy in hands and feet; extreme fatigue; no appetite; cold sensitivity (refrigerator, freezer, AC). Would be totally knocked out, body and soul. I had to take a break at round 6 because my CBC/platelet count was too low. A welcome break with 2 weeks off of needed recovery time. By round 7, I was pretty much incapacitated with exhaustion, malaise, low grade temps. It would lift after maybe 10 days post chemo—and then start all over again. I am self-employed, and honestly, couldn’t work after maybe round 3-4. My brain was in a fog; my gut felt strip mined and I was constantly beyond exhausted. I felt like I couldn’t rely on myself for my clients. All of this was emotionally and financially difficult. I do have a spouse who is employed, so we relied on one income. Also, was/am fortunate to have a therapist who specializes in dealing with cancer, grief and trauma—so met with her by zoom when possible. I joined a zoom cancer support group but did not find it helpful. It actually scared me—but everyone is different, so if you feel it may help, check it out.
FOLFOX protocol is cumulative—so at least for me it definitely got harder. With each round, I always hoped it wouldn’t be so bad—and for you, I hope it doesn’t—but just know that changes happen and maybe plan ahead for what works or doesn’t. Neuropathy worsened: my fingertips felt numb/tingling—like asleep but wouldn’t wake up. The soles of my feet felt numb and like I was walking on marshmallows. Not painful, but annoying and disruptive.
I was advised to keep active. (Hah!) And I used to be… but at best, I’d spend some time gardening (I live in a warm climate) and try to go for a 10 minute walk every day (maybe 20 minutes at best). In hindsight sight, wish I’d pushed through with more activity. Recently read scientific data that shows exercise does have an impact on outcome.
Oh, and this: my hair REALLY thinned. I’ve been going “blond with age” and had very highlighted, always thick hair that was my favorite “accessory.” With chemo, I’d find hair everywhere. Dreaded brushing, washing it. I stopped using a blow dryer. No chemicals or heat! I feel fortunate that I didn’t have to shave my head—there are worse things—but it was still upsetting. Your hair will grow back! (My friend told me to look online for hair “toppers” which I knew nothing about. If it matters to you, it’s worth checking out for thinning and hair loss.)

I honestly don’t know how I made it through—but I did—and you wil too. It feels like forever and like you’ve lost control of—well, everything—but you will get through it. Again, it’s temporary.

I feel like one of the MOST important issues is to communicate with your care team. Even the most minor complaint needs to be addressed. It’s okay to complain—you’re having chemo!—and that’s what they’re there for. You have to advocate for yourself and if you can’t, please find someone who can. Your place of treatment will have resources to help you.
ALSO: I kept a small notebook and pretty much every day wrote down descriptions of how I was feeling—physically and emotionally. It really helped to have a record of everything. Write down questions that pop into your head so you can address them before, during or after each treatment.
I know this is a lot—but I hope even a tiny bit of it helps. Again, it’s hard, it sucks—but it’s temporary! I wish you the absolute best outcome.

I'd like to know more about your diagnosis.... For one thing 6 month FOLFOX is being used less and less, research is determining that 3 months is as effective and for many patients post surgery chemo has no improve survival, over no chemo at all. Secondly I think your experience is in the minority and I'd hate to think that patients will read this and be frightened. For example my 3 month chemo was really uneventful except for very slight neuropathy and I think one instance of diarrhea. Of course everyone's different!

I had FOLFOX (oxaliplatin and 5-FU) for an atypical colon cancer dx. The protocol was 12 rounds over 6 month period—so chemo infusion every other week. I had a port placed in my chest. I have tiny veins and as much as I hate the port (it’s not really that bad or noticeable), it makes lab work easier on me and health care person/s.
First, best advice: GET HYDRATED AND STAY HYDRATED, before and after chemo!!! Room temp water is your friend.
My treatment worked like this: Day of - IV pre-chemo meds: Emend, ondonsetron (both for anti-nausea/anti-vomiting) and a steroid (can’t remember name—but it prevents allergic reaction. Does not come with same drowsiness as Benadryl, sort of delayed fatigue—and did not cause “moon face.”). Make sure you’re getting pre-chemo anti-nausea meds and also a prescription of same to have at home. I did have nausea, but did not get “the pukes.” Take the medicine!
During entire 6 months of chemo, I was unable to tolerate ANYTHING cold or even chilled —water, smoothies, yogurt, etc. That part of treatment was really (really) frustrating.
I don’t know if this is part of your treatment but here goes: After oxaliplatin infusion came the 5-FU. A long IV tube was inserted into my port which was attached to a pump that infused 5-FU for 48 hours. The pump is about the size of a large transistor radio. I wore the pump in a fanny pack because the shoulder strap the pump came with aggravated my neck and shoulders. The pump was somewhat annoying to wear but tolerable. I’d go back to clinic on “day 3” to return/remove pump.
My oncologist said the 48-hour pump treatment has less toxicity and side effects, and is more easily monitored—rather than oral pills of same.
The first several rounds weren’t too bad until day 3 and then I’d totally crash. I called it “chemo-flu.” Slammed with fatigue, queasiness, maybe diarrhea; just felt like c-r-a-p. I was vigilant about taking anti-nausea meds. Take them before nausea sets in! Ondonsetron (Zofran) is very constipating—but that offset some of diarrhea side effect.
I ate a very restricted, bland, light diet. Advised to eat nothing uncooked or raw. Nothing sounded good and my appetite (and mood) were very changeable. Eggs, toast, chicken soup; broth—ew; crackers pretzels, white rice, room temp apple sauce—ew), Memorial Sloan Kettering has a great website with a ton of info—including diet and recipe recommendations. As advised, tried to drink as much water as possible but it was difficult; felt lousy on a queasy stomach. The nurses especially encouraged hydration, so do best you can. Strangely, craved and was able to tolerate Trader Joe’s almond or peanut butter-filled pretzels. My oncologist said not to worry about balanced diet choices during chemo treatment—more important to get calories any way you can take them. (And he loves the TJ’s pretzels as a good snack choice!) The food thing messed with my head because I’ve always really been into healthy diet and cooking—but that had to be put on hold. Try to remember: this is temporary!
During my week off of chemo, one day I’d go to the clinic and get IV hydration. Anecdotally this supposedly helps reduce side effects. I can’t say it actually helped because can’t compare to not having IV hydration during treatment—but I did it regularly. Ask your team?
By round 4: mild but constant neuropathy in hands and feet; extreme fatigue; no appetite; cold sensitivity (refrigerator, freezer, AC). Would be totally knocked out, body and soul. I had to take a break at round 6 because my CBC/platelet count was too low. A welcome break with 2 weeks off of needed recovery time. By round 7, I was pretty much incapacitated with exhaustion, malaise, low grade temps. It would lift after maybe 10 days post chemo—and then start all over again. I am self-employed, and honestly, couldn’t work after maybe round 3-4. My brain was in a fog; my gut felt strip mined and I was constantly beyond exhausted. I felt like I couldn’t rely on myself for my clients. All of this was emotionally and financially difficult. I do have a spouse who is employed, so we relied on one income. Also, was/am fortunate to have a therapist who specializes in dealing with cancer, grief and trauma—so met with her by zoom when possible. I joined a zoom cancer support group but did not find it helpful. It actually scared me—but everyone is different, so if you feel it may help, check it out.
FOLFOX protocol is cumulative—so at least for me it definitely got harder. With each round, I always hoped it wouldn’t be so bad—and for you, I hope it doesn’t—but just know that changes happen and maybe plan ahead for what works or doesn’t. Neuropathy worsened: my fingertips felt numb/tingling—like asleep but wouldn’t wake up. The soles of my feet felt numb and like I was walking on marshmallows. Not painful, but annoying and disruptive.
I was advised to keep active. (Hah!) And I used to be… but at best, I’d spend some time gardening (I live in a warm climate) and try to go for a 10 minute walk every day (maybe 20 minutes at best). In hindsight sight, wish I’d pushed through with more activity. Recently read scientific data that shows exercise does have an impact on outcome.
Oh, and this: my hair REALLY thinned. I’ve been going “blond with age” and had very highlighted, always thick hair that was my favorite “accessory.” With chemo, I’d find hair everywhere. Dreaded brushing, washing it. I stopped using a blow dryer. No chemicals or heat! I feel fortunate that I didn’t have to shave my head—there are worse things—but it was still upsetting. Your hair will grow back! (My friend told me to look online for hair “toppers” which I knew nothing about. If it matters to you, it’s worth checking out for thinning and hair loss.)

I honestly don’t know how I made it through—but I did—and you wil too. It feels like forever and like you’ve lost control of—well, everything—but you will get through it. Again, it’s temporary.

I feel like one of the MOST important issues is to communicate with your care team. Even the most minor complaint needs to be addressed. It’s okay to complain—you’re having chemo!—and that’s what they’re there for. You have to advocate for yourself and if you can’t, please find someone who can. Your place of treatment will have resources to help you.
ALSO: I kept a small notebook and pretty much every day wrote down descriptions of how I was feeling—physically and emotionally. It really helped to have a record of everything. Write down questions that pop into your head so you can address them before, during or after each treatment.
I know this is a lot—but I hope even a tiny bit of it helps. Again, it’s hard, it sucks—but it’s temporary! I wish you the absolute best outcome.

I'd like to know more about your diagnosis.... For one thing 6 month FOLFOX is being used less and less, research is determining that 3 months is as effective and for many patients post surgery chemo has no improve survival, over no chemo at all. Secondly I think your experience is in the minority and I'd hate to think that patients will read this and be frightened. For example my 3 month chemo was really uneventful except for very slight neuropathy and I think one instance of diarrhea. Of course everyone's different!