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

Posted by chinoomee @chinoomee, Mar 7, 2024

Just had first infusion today.
Felt fine and now hours later everything hurts ( numbness, tingling, muscle aches, muscle spasms upon sneezing in my jaw, muscle spasms across my eyes/temple upon tear production and of course upon water being just slightly cooler than room temp) how did you guys manage?

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Profile picture for llad24 @llad24

Do you still have Neuropathy side effects after finishing treatment? I'm starting my FOLFOX treatment for 6 months next week and this is one of the side effects that scares me. I'm very active, still in the military and I believe if I get all those neuropathy side effects it will affect my military career big time. My oncologist didn't like the idea of using Cryotherapy during treatment, even though a lot of people had success in mitigating those neuropathy and cold sensation side effects. I will see how first treatment goes.

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@llad 24 The first treatment in my case did not affect me it was after the 8th treatment that the $%^&* hit the fan No cure just live with it And keep your mouth shut about the side effects which you will have Just go slow and you can make excuses for the unbalance step here & there It is a tuff road Felt I would never see the light at the end of the tunnel but I did it and am cancer free so far You can do it as I did not think this stuff would work but it does

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Profile picture for Lee @leeb123

I'm on follow regimen.
My first 3 treatments were tough.
I've had the "push" removed and a dose reduction.
I have two treatments left before radiation.
Currently my platelets are low and I'm delayed a week.
There is no handbook for this crap, read what others have done to cope.

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@leeb123 folfox

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I'm on follow regimen.
My first 3 treatments were tough.
I've had the "push" removed and a dose reduction.
I have two treatments left before radiation.
Currently my platelets are low and I'm delayed a week.
There is no handbook for this crap, read what others have done to cope.

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My doctor recommended the Lifepro Vibration Plate with handlebar and magnetic accupoints. I purchased mine from Amazon. It was around $113.00, but I think they have went up in price.

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Profile picture for angielewis1959 @angielewis1959

Yes. The side effects are still there but I started using a vibration plate about 3 weeks ago and this seems to help. The vibration plate has strengthened my legs and has helped with my balance. I am so thankful that my foot doctor recommended the vibration plate for me. She is a Godsend.

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@angielewis1959
I'm looking to buy a tried and tested one .. pl share your brand and model, thanks

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Profile picture for llad24 @llad24

are you still having those side effects?

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Yes. The side effects are still there but I started using a vibration plate about 3 weeks ago and this seems to help. The vibration plate has strengthened my legs and has helped with my balance. I am so thankful that my foot doctor recommended the vibration plate for me. She is a Godsend.

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My neuropathy went away completely within 2 months after completing therapy. There's really no reason not to use cryotherapy and wish I would have started it immediately. Simple cold packs work really well and they are kept in chemo for nurses to use. There are no also simple sock like devices to wear during infusion which appears to be really effective

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Profile picture for roywalton @roywalton

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!

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Do you still have Neuropathy side effects after finishing treatment? I'm starting my FOLFOX treatment for 6 months next week and this is one of the side effects that scares me. I'm very active, still in the military and I believe if I get all those neuropathy side effects it will affect my military career big time. My oncologist didn't like the idea of using Cryotherapy during treatment, even though a lot of people had success in mitigating those neuropathy and cold sensation side effects. I will see how first treatment goes.

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Profile picture for angielewis1959 @angielewis1959

I sure wish I would have known that 10 years ago after infusions with Oxaliplatin. The nerve damage seems to be from the weakness in the hip, knee buckling, foot drop and now hammertoes on my right side. It's hard to believe that the drugs we have to take to save our lives
can do such damage.

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are you still having those side effects?

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Profile picture for tamobillings @tamobillings

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.

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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!

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