• Foods and Fagigue After Folfox Pump Disconnect

    Asked by mtnraindancer on Tuesday, January 8, 2019

    Foods and Fagigue After Folfox Pump Disconnect

    I was wondering about the severe fatigue after the Folfox pump is disconnected. For two days, I feel like I have to sit and catch my breath with simple things. After two days, it seems better. The other thing was my total lack of appetite with this 5th round. I have been blessed not to have nausea or diarrhea and overall my appetite has been good. The two days after this round were completely different...as if the hammer dropy tped. NOTHING appealed to me...no drinks...food...nothing! I'm just wondering if this will get worse with each coming treatment as I've read it is cumulative. The neuropathy seems to fade within 1-3 days but the overall tiredness is another story. Any tips or shares of your own experience would be welcomed.

    5 Answers from the Community

    5 answers
    • allier4's Avatar

      I had two rounds of Folfox with the pump (2013 -10 sessions and 2017 - 12 sessions). I always planned for the day after my disconnect to be a down day - I would usually sleep. The tiredness can be cumulative. Definitely talk with your oncologist to get their input.

      9 months ago
    • JaneA's Avatar

      I always found that the third and fourth day of FOLFOX was the worst for fatigue and appetite.

      The effects of chemo are cumulative, and it does seems to get a little worse - which means we have to try harder to eat. My oncologist told me to eat "anything" that appealed to me. I confess that I ate warm brownies with vanilla ice cream, once the ice cream had melted on top of the brownie. Once you're done with treatment, you can eat healthy.

      Best wishes - do this one day at a time.

      9 months ago
    • IKickedIt's Avatar

      Extreme fatigue...yes! I would have about a 2-hour window after I was disconnected from the pump and then I would literally sleep for about 12-15 hours straight. I literally could not keep my eyes open. I would always plan to be disconnected Friday afternoon and then that was my "down" weekend with no plans. I worked a half-day Monday, and then was fine by Tuesday. I don't think that it had a cumulative effect like other problems. I think it was pretty consistent throughout the 12 cycles.

      I had severe first-bite jaw pain so that took away my appetite for about 4 or 5 days since it just wasn't worth the pain to even try to eat. And yes, my taste buds were messed up. My family couldn't believe that this chocoholic was spitting it out. I drank Ensure until I was able to eat. Or mushy foods, like scrambled eggs. It was a struggle since I wasn't interested in eating. But you know you have to stay hydrated and get the proteins somehow.

      Be grateful that the neuropathy resolves. Keep a very, very close watch on that since that can result in permanent damage. Most of the other problems resolve over time. My fatigue resolved fairly quickly after I finished treatments, although I know for others it lasted longer.

      I found that keeping a detailed journal throughout and documenting all the problems and things that exacerbated the issues (i.e. tired going into chemo, constipated going into chemo, drinking coffee or alcohol beforehand or not being dressed warmly enough, etc.) was very helpful. You might be able to prepare before or eliminate something from your routine or diet that might lessen the severity of the side effects.

      Good luck...this is doable!

      9 months ago

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