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

I did a course of FOLFOX (oxaliplatin and 5-FU) infusion through a port. I received oxaliplatin at the clinic and then 5-FU through a portable infusion pump that I wore at home during a 48-hour period. FOLFOX was rough, but everyone is different, receiving different dosages and for different lengths of time.

I'm sharing the info above because 2 months after FOLFOX chemo, I started on capecitabine (5-FU) pills. I take 1,500mg 2x day and can compare and share my experience. I've been on the pills for 3.5 months of a 6-month protocol. 1) I was super-worried about taking the pills. My gut is very sensitive and I have IBS. FOLFOX did a number on my gut and I did not want to go there yet again. My entire care team reassured me that it wouldn't be as difficult as IV chemo. 1) Definitely take the medication with food!!! Even if it's just a snack. When I first started, I pre-medicated with 8mg Zofran (anti-nausea), ate a meal or snack and then took the pills. Just me, but over time found that I rarely struggle with nausea (knock wood) or need to take ondansetron. Ondonsetron is very constipating, but that can offset possible side effect of diarrhea. Keep Pepto and Imodium around, just in case of diarrhea. So far, knock wood, that has not been a frequent issue for me. Everyone is different! I did develop bad GERD and heartburn, but found that keeping even a little something in my stomach helped. For heartburn, I was advised to take Pepcid (famatodine) 40mg 2x daily and Tums, but other PPIs are contraindicated (always ask your care team). Repeating, this is only my individual situation. 2) Get prescription for anti-nausea med: ondansetron (Zofran) and have it with you, just in case. And again, for me, the best way to manage GI side effects is to eat something, even if not hungry. Crackers, pretzels, yogurt, just a little something. And I'm not a habitual snacker, so it kinda goes against my nature.
Sorry to run on... My main side effect is fatigue. I keep saying, "why am I so tired?" And my spouse, doc or nurse will say: "Fatigue is the #1 side effect. Don't be so hard on yourself!" Exercise if you can; it supposed to combat fatigue. I try... 3) I'd recommend using heavy moisturizer on your hands and feet before or as soon as you start treatment. I did not do this and wish I had. It's very important to stay well moisturized and hydrated! After 3 months, I developed Hand Foot Syndrome (HFS), a potential side effect. I had to hold treatment twice in order for the flare-up to calm down. It's painful and annoying. 4) On FOLFOX, my hair thinned a lot, but hair does grow back, and it could be worse... However, 3.5 months on capecitabine, NO hair loss--and in fact my hair is growing back post-FOLFOX. Be gentle on your hair though. Avoid heat (hot hair appliances). This stuff is very drying.
I totally understand your concern about GI side effects. It was/is literally one of my biggest fears around taking any meds, much less chemo. I stick with a pretty bland IBS diet and honestly, have to make myself eat a snack to avoid heartburn and occasional background queasiness. ALWAYS take the medication with food. It will help.
Ask your oncologist and care team any question that crosses your mind. Report any side effect, no matter how minor you think it is. Remember, this is temporary. Wishing you an easy treatment and good luck!

I’m doing alright. I started having heart racing and was worried about continuing with the Capecitabine but my provider hasn’t gotten back to me. They had me go do an EKG because this is stressful to the heart. I’m healthy but I just don’t know if I should resume. This is Adjuvant therapy Just worry about the side effects. I don’t even drink because I hate the feeling so these medications I struggle with.

@tamobillings, how are doing?

Use the cold hand gloves (healthy hands) and cold pack socks, bought on Amazon, both have ice pack inserts and they really work. Also, suck on ice chips during the oxaliplatin infusion. I've had 7 treatments and it's helped tremendously!

Yes... I do believe, like most chemo regimens, the Xeloda pills are a bit rough on our digestive tracts. Understand that I've not done Folfox, FLOT, or Capox... I only did the CROSS protocol of Carboplatin and Taxol along with concurrent radiation treatments. I tend to call what I did, the CROSS protocol... baby chemo. I don't believe it's as rough as those other regimens in general. But I also should qualify this by saying when used as a first-line treatment. In general I believe 2nd and 3rd line treatments tend to give us EC patients more difficult side effects. But this is just my observation when talking to hundreds of other patients.

Did you lose hair? I was told these medications don't have hair loss? I will be taking pills (14 days) and infusion 1x per 21-day cycle. Also, I worry about how hard the pills are on your stomach. They said to take with food but not sure yet what will help. I start on the 3/28.

I have my first chemo appointment on the 28th with both of these medications. I’m doing the infusion and the pills. So taking in all information here about how to manage. I have 4 treatments, 3 months.

I have not completed treatments - I think I've had 7 treatments. No really bad side effects, most are better 5-6 days after treatment infusion. Need to use lots of moisturizer on hands and feet. I'm starting to get hand foot syndrome - just need to give hands and feet a little TLC!

@dam2611, have you completed treatment now? Any lingering side effects? How are you doing?

I stopped the Oxiplatin around the end of October. Then continued with four cycles of Capecitabine (2,000 twice a day/two weeks on and one week off). Finished around the 15th of January and had my CT Scans on Jan. 31st expecting to be cancer free. After discovering it had actually spread to my liver and peritoneum, the did a liver biopsy on Feb. 25th. (can't believe it took so long to get in). So that was sent in for genetic testing and my oncologist wanted me to start on Folfiri right away. But the biopsy scans showed no changes since the scans on Jan. 31st. So I decided to hold off on treatment until March 20, when we will start the Folfiri, and whatever immotherapy he has decided upon. I have Metastatic Mucinous Adenocarcinoma. I'm not convinced that Folfiri will work for that. But he did his fellowship right there at Mayo and is a smart guy, so giving him one more chance. The goal is the shrink the tumors in those areas, with possible HIPEC surgery later on. I would come to Mayo if we get to that point because of how specialized that is. Or maybe even the possibility of PIPAC, which seems to show more promise in cancer treatment. He's not an optimistic guy, and everything seems pretty textbook right now. But we'll see what happens next.