• Who else has had FolFox, and what were your side effects?

    Asked by abrub on Monday, December 17, 2012

    Who else has had FolFox, and what were your side effects?

    I had 7 cycles of FolFox, and had neuropathy, darkening and splitting of the skin on fingers and toes, "first bite" pain (pain on the first bite of food), cold sensitivity, and loss of fine motor skills. In my case, it caused constipation, which combined with the fragility of my skin, resulted in a blindingly painful anal fissure. Tho I've heard it is a common side effect, chemo brain was not an issue for me (or if it was, I've forgotten about it!)

    I know that my side effects tended towards the very uncommon and extreme. How did others fare? What helped you alleviate side effects? Did they ever completely resolve?

    Were you able to complete your planned treatments? (I got through 7 of 12, and quit.)

    3 Answers from the Community

    • IKickedIt's Avatar

      I wanted to quit after my 8th round of FOLFOX, but I had a wonderful oncologist who kept me focused on the finish line. I finished in October 2011 and have just gotten my 2nd "cancer-free" scan results.

      I didn't have the anal bleeding, but did have all the other side effects you experienced (including the horrible jaw pain) and severe chemo brain (memory loss and severe damage to my processing skills), permanent vestibular damage (balance), and nightmarish diarrhea after days and days of nightmarish constipation.

      Some have resolved. Chemo brain is resolving slowly. I no longer feel embarrassed by my reduced processing skills - just got a new high-tech job and am confident that I will be successful. I can feel my hands and have about 90% of my fine motor skills. Feet are still numb. I am in PT for my balance issues and muscular and nerve damage. That damage caused drop foot which resulted in breaking toes on two separate occasions. I've been in a soft walking boot since May. It's frustrating, but I've accepted that "it ain't over when it's over." But it was all a small price to pay to gain 40+ years with my family and friends.

      almost 4 years ago
    • LauraJo's Avatar

      I had the cold sensitivity for the first several days in each round...I would drink hot water at work in the summer, cause I was cold all the time in addition to the cold sensitivity to beverages. Nausea on Thursday morning - just Thursday morning, go figure. AFTER I finished my 8 scheduled rounds, I got neuropathy in my hands & feet, about 6 weeks later. My hands are fine now, after about a year....the feet are still iffy, but manageble, and I still have hope that they will recover also. Other than that, not much, other than being tired, but it was my second round of chemo & I had an ileostomy at the time & was recovering from my big surgery for colon resection & j-pouch.

      almost 4 years ago
    • fastdog's Avatar

      I had 7 cycles of Folfox and was violently ill for several days after each treatment, until they figured out a pill and infusion regimen that helped. I was very cold sensitive, couldn't touch the vegetables in the supermarket, nor drink anything cold, for a week after a treatment. The nail on one big toe turned dark and eventually fell off. I stopped chemo before the last treatments because in order to have HIPEC surgery, you have to be off chemo for a couple of months. After the surgery in June, I had numbness and tingling in my legs and feet that is only now beginning to improve. I attributed it to the cutting of nerves during surgery, and perhaps it was, but reading of the experiences of others, it could have been from chemo. I did have constipation, and took stool softeners, which helped. Apart from the awful vomiting and inability to eat, it seems that I was pretty lucky, compared to the experiences of others.

      almost 4 years ago

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