Considering stopping chemotherapy due to neuropathy - Musician with colon cancer...

My name is John. I had cecum cancer and I had to undergo a bowel resection. I am undergoing chemotherapy with the objective of managing cancer. So far no spreading but the side effects of chemotherapy are more of a problem than the disease itself.

That is something of a surprise. Normally the nearest lymph node is removed during the initial surgery.

I have not experienced neuropathy with fioracil.My side effect symptoms haven't shown up yet except for erectile dysfunction.

Thank you, John. I agree that the chemo is rougher than the surgery--by far. My doc says the goal of my treatment is to be cured, not just to prolong my life. He wants me to do 12 infusions; my third is this Wednesday. I think I will do six infusions and take my chances. I really can't do 12; my innards won't tolerate more. I also had to have an iron infusion--INFeD. I had a delayed allergic reaction. So if that is in your future, ask a lot of questions. The fourth day after the FOLFOX infusion has been the worst. Fortunately, I have so far been able to be up and around and feeling generally good during the off week. All the best on your path. Nice knowing I've got folks out there going through this. James

I was diagnosed with stage 4 colon cancer spread to my liver. From November till this may I did 12 chemo treatments of fullfox and 5fu. I’m 45 years old so I promised myself to hit is as hard as I can now while I’m healthy. My neuropathy started on the 10th dose. Other then that I had very little side affects. Occasional throwing up or diarrhea. But tolerable. As soon as I experienced any numbness I told my doctor so he could stop the fullfox. But I still ended up getting one last dose which I wish I didn’t. My toes and finger tips are pretty much permanently numb. With occasional numbness in my entire left leg. My advice. As soon as you feel tingly tell your doctor no more of that drug. Switch to another. All I’ve been through and the thing that upsets me the most is not being able to feel my feet. Good luck with it all. Stay positive and drink water! Lots of it. I drink like 200 ounces on my chemo days to flush my system. Cut all your sugar and carbs out of your diet if possible as well. You will find inflammation in your body will disappear.

Thank you so much, Phillip. Very kind of you to share. The tingling, burning in my fingers has subsided a bit, but if I hold a bottle of cold water for more than a few seconds, those sensations come back. I think I mentioned that I'm a musician (keyboards, bass) and I can already sense a loss of feel. Plus, my fingering on the keys has gotten clumsy. Never had that problem before. Music is my main hobby, not to mention my raison d'etre, so I'm not going to risk further nerve damage just for a few more years. Did you get "first bite syndrome"--that 10-plus pain when you haven't chewed for a while and you eat something? It's a chemo-related condition according to the NIH and hurts like hell but fortunately goes away after about 10 chews This will be going into the weeds a bit RE chemo, but I had a rather disturbing thought this morning: If chemo in the process of taking out the cancer blows up your immune system in the process, can your white blood cells, etc., ever really recover to attack other normal pathogens? Does a body become kind of permanently sickly? Not to mention, FOLFOX and other chemicals are also carcinogens themselves. I'm 73 and wonder if I'm just being greedy. Hang in there, brother. Cancer and its treatment ain't for the weak.

I just got diagnosed with 3c colon cancer and will be put into a trial where I'll either get folfox or folfoxirin... with that neuropathy, can you still walk? I'm scheduled to have 6 months of treatment twice a month- so 12 treatments if that's the right term... I'm so sorry for everything you have and are experiencing... I'm 56 so... yeah I'm trying to go hard while I am still strong and "healthy". But... read the side effects and that poison sure is rough...

@phillip... can I ask, what was the worst day of chemo? I have dogs and I want to make sure I can still walk them/care for them.... just trying to get ready. I start in 2-3 weeks...

Hi, Renee. My worst days are Saturdays and Sundays after the Wednesday infusion. Exquisite fatigue. FOLFOX is a bit of a bear, particularly the 5-FU that they send home with a pump for 48 hours. I call it the Stürmbannfüher of the regiment/regimen I'm taking. It is apparently the most potent of the three. It has to be be microdosed through the pump. The others drip out. Did you say you are having/had surgery? My little barnacle of cancer seated itself in the secum-- the colon's entry nodule for digested food. They removed it and most of my ascending colon, robotically. The surgery was a success; no bag or radiation. One bit of hope I can share: My doctor had initially prescribed 12 infusions over 12 months, but said Wednesday that six should do the trick. He is still saying "we're going for a cure, not just prolonging your life." That means two more sessions not eight. Maybe your docs will have the same recommendation for you once you get going. I didn't qualify for any trials. Sure do wish you the best. They can do rather amazing things now, especially with colon cancer. Keep in mind you are not alone. Use this site; it's very helpful l, both through information and finding folks in the same boat. We're all just a click away.

James from what my oncologist told me the 5FU is not responsible for the neuropathy but is the oxaliplatin. I was diagnosed 1 year ago with stage 3c colon cancer and went through 13 weeks of weekly treatment before developing small bowel toxicity from the 5FU and had to stop treatment (4 weeks short of full treatment). Around week 12 I started developing neuropathy and 5 months after ending treatment it's still pretty bad. Definitely talk with you care team about your concerns. I did cryotherapy during treatment and it probably kept it from being worse. Good luck.

You're right, Grace. Thank you. I have since been corrected that it is the Oxaliplatin. The tingling and electrical shock in my fingertips is slow to dissipate this time. They assure me it's not permanent. The first bite syndrome was pretty awful this time. Other side-effects were more pronounced and slower getting gone. Fortunately, I don't have an infusion -- my fifth -- and second-to-last one--until the 20th. By the way, is anyone able to walk or do any exercising. When things have got me down, exercising is the last thing I want to do. Best to all y'all.

This is such a difficult balance to navigate - weighing the benefits of treatment against quality of life concerns that matter deeply to you. Many in this community have faced similar decisions about managing side effects while continuing their passions and daily activities. Consider discussing with your oncology team about potential modifications to your treatment plan, dose adjustments, or neuropathy management strategies that might help preserve function while still receiving cancer treatment. Others here may have valuable experiences to share about how they've handled neuropathy concerns during their treatment journey.