Folfox + Avastin Side Effects?

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Stefi
Stefi Member Posts: 31
edited March 2014 in Colorectal Cancer #1
Mom started chemo (Folfox plus Avastin) Wednesday. She just got unhooked from the 46 hour pump today at about 4. Her only real side effects so far have been that food doesnt taste good to her and she is really tired. I have read all the papers with all the possible side effects but prefer personal experience more. Do you all get really fatigued with this chemo? Is there anything she can do to gain some energy back? I know everyone is different and handles this differenly, but I am just kind of wondering what to expect. How long did the fatigue last? I also remember reading that each consecutive treatment gets worse? Any advice and experience will be so helpful to me. Thanks!

Steph

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  • bdee
    bdee Member Posts: 304
    #2
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    Side affects
    I'll start out by telling you everything about me medically is weird before I'll tell you my side affects for folfox plus avastin.
    1st and 2nd treatment nausea with vomiting and tiredness and starting loosing my hair in chunks. 3rd and 4th treatment - nausea with vomiting and tiredness now no hair, no appetite and I can't swallow any solid food. The doctor had to stop oxy after the fifth treatment because I couldn't drink anything cold and hot stuff wouldn't stay down. This was starting the third month of chemo and the first month of not being able to eat anything solid and only able to drink hot tea. Two weeks after stopping oxy, I was still on everything else, I was able to start drinking cold beverages so I would have malted milk shakes, Ensure, Coke, iced tea. After two month of not eating anything I started being able to drink chicken broth, but not with anything in it. Then I could eat some scrambled eggs, but no toast. Anyway three and 1/2 months after stopping oxi I was 65 pounds lighter, no hair, looked like I was on my death bed but ate my first solid food. A chicken wing. Then everything started looking up from there.
    My doctor has started me on CPT-11 along with my 5fu, Avastin, Flolic Acid, etc. Now I'm back to not being about to eat for the first three or four days after the treatment and I'm throwing up even at the chemo suite while getting the treatment. I get five (yes I said five) pre-meds for nausea and I still throw up. My doctor says he doesn't have any other patients having or ever had the same problems on Oxy or CPT-11 like I have had.

    Good Luck,
    Debbie in Arkansas
  • abrub
    abrub Member Posts: 2,174 Member
    #3
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    Tastes did change
    I found that everything tasted too spicy to me, even when it was barely spiced (and I've always liked spicy foods. I can eat them again.) She'll need to find what tastes good while she's on chemo.

    Fatigue - major issue. Also cold sensitivity from Oxaliplatin, and neuropathy from both oxali and 5FU. Remind your mom to keep her hands and feet well moisturized with something like "Udderly Smooth". My hands and feet discolored and the skin split. Also, remind her to rinse her mouth frequently with salt/baking soda solution to avoid mouth sores.

    I'm prone to rarer side effects, so I had pain on the first bite of food (which I've seen here is not as rare as my dr made it seem.)

    Make sure she tells her dr about any and all issues - side effects, problems eating, etc. There are things to do to address the problems.

    Good luck!
  • hoya1973
    hoya1973 Member Posts: 37
    #4
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    abrub said:

    Tastes did change
    I found that everything tasted too spicy to me, even when it was barely spiced (and I've always liked spicy foods. I can eat them again.) She'll need to find what tastes good while she's on chemo.

    Fatigue - major issue. Also cold sensitivity from Oxaliplatin, and neuropathy from both oxali and 5FU. Remind your mom to keep her hands and feet well moisturized with something like "Udderly Smooth". My hands and feet discolored and the skin split. Also, remind her to rinse her mouth frequently with salt/baking soda solution to avoid mouth sores.

    I'm prone to rarer side effects, so I had pain on the first bite of food (which I've seen here is not as rare as my dr made it seem.)

    Make sure she tells her dr about any and all issues - side effects, problems eating, etc. There are things to do to address the problems.

    Good luck!

    Acute Neuropathy
    Biggest side effect was the tingling and numbness in my hands and fatigue. Appetite better after round 4. So far I seeem to have reduced side effects with each treatment.
  • geotina
    geotina Member Posts: 2,111 Member
    #5
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    Steph
    My hubby (61) was on the same chemo as your mom and I will say fatigue was his biggest enemy. Just no energy, tires very easily when doing some routine chores, early to bed. This is so normal with this cocktail. Tell her to just give in to the fatigue and rest and hydrate.

    As far as food tasting not so good, George did complain about the "metal taste" but his appetite remained good on this cocktail. George just complained that the "metal taste" was mostly on the tip of his tongue. Just give her food that you know she enjoys.

    Take care - Tina
  • Stefi
    Stefi Member Posts: 31
    #6
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    hoya1973 said:

    Acute Neuropathy
    Biggest side effect was the tingling and numbness in my hands and fatigue. Appetite better after round 4. So far I seeem to have reduced side effects with each treatment.

    Thanks!
    Thank you all for your comments. So far, the fatigue is her only real problem. How long does the fatigue normally last? I have heard 4 days after treatment is when it lets up a bit. I guess my question is, is this 4 days from the start of chemo or 4 days from unkooking from the 46 hour pump? I keep telling her to listen to her body and rest, but she is not the type of person to just lay around...she always wants to be doing something.

    Steph
  • hoya1973
    hoya1973 Member Posts: 37
    #7
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    Stefi said:

    Thanks!
    Thank you all for your comments. So far, the fatigue is her only real problem. How long does the fatigue normally last? I have heard 4 days after treatment is when it lets up a bit. I guess my question is, is this 4 days from the start of chemo or 4 days from unkooking from the 46 hour pump? I keep telling her to listen to her body and rest, but she is not the type of person to just lay around...she always wants to be doing something.

    Steph

    Fatigue Fades
    If it's any consolation, my fatigue appears to be less with each treatment. I may be getting a tolerance to chemo? Generally the fatigue was for 2 - 3 days following disconnection from the portable pump. Apparently chemo impacts everyone differently.
  • traci43
    traci43 Member Posts: 773 Member
    #8
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    Firt time (summer/fall 2007)
    Firt time (summer/fall 2007) my main side effect was the cold sensitivity and fatigue. The cold sensitivity (food, drinks) lasted about a month post-chemo. The fatigue lasted about 3 days, so I'd go in on Monday, pump out on wednesday and by Saturday I was up and around again. I ate and drank very little while I had the pump. I didn't work or work out because I was focusing on getting through chemo.

    Second time (winter/spring 2009), I had been working out before chemo so the fatigue was far less. I'd go in Wednesday, pump out on Friday and by Monday I was back at work and working out! Cold sensitivity recurred. Ate and drank very little while the pump was in. Nothing tasted good.

    Third time (fall 2009)I did not eat or drink at all while the pump was in, then was ravenous after. I'd lose and gain 5 - 10 pounds and just learned to live with it. About 2 days after the pump came out I'd be drinking tons of water. I had more fatigue this round because I was out of shape after recovering from surgery, so I didn't work out but did work.

    The cold sensititivy is the longest side effect. Keep hands and feet warm at all times, I even use flip flops in the shower to avoid the cold tiles. Nothing less than room temperature to eat or drink, warmer if you can stand it. Oh and to keep from tasting that 5-FU bolus, suck on a lemon or lime hard candy!
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    #9
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    traci43 said:

    Firt time (summer/fall 2007)
    Firt time (summer/fall 2007) my main side effect was the cold sensitivity and fatigue. The cold sensitivity (food, drinks) lasted about a month post-chemo. The fatigue lasted about 3 days, so I'd go in on Monday, pump out on wednesday and by Saturday I was up and around again. I ate and drank very little while I had the pump. I didn't work or work out because I was focusing on getting through chemo.

    Second time (winter/spring 2009), I had been working out before chemo so the fatigue was far less. I'd go in Wednesday, pump out on Friday and by Monday I was back at work and working out! Cold sensitivity recurred. Ate and drank very little while the pump was in. Nothing tasted good.

    Third time (fall 2009)I did not eat or drink at all while the pump was in, then was ravenous after. I'd lose and gain 5 - 10 pounds and just learned to live with it. About 2 days after the pump came out I'd be drinking tons of water. I had more fatigue this round because I was out of shape after recovering from surgery, so I didn't work out but did work.

    The cold sensititivy is the longest side effect. Keep hands and feet warm at all times, I even use flip flops in the shower to avoid the cold tiles. Nothing less than room temperature to eat or drink, warmer if you can stand it. Oh and to keep from tasting that 5-FU bolus, suck on a lemon or lime hard candy!

    My experience was similar to
    My experience was similar to the others. I had folfox but no Avastin. Would get the pump on Wed. Pump off on Fri. I was tired with the pump on but I did get out and do things, like grocery spop or drive my daughter around. Sat was my down day. Sometimes I wanted to sleep all day and didn't want to eat at all. By Sun I felt ok. I always went to church. Mon I was back to work.

    The neuropathy still bothers my feet.

    Good Luck. Brenda

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