hey buzzard got some questions 4 u

johnnybegood
johnnybegood Member Posts: 1,117 Member
edited March 2014 in Colorectal Cancer #1
hope you are doing well.i am having side effects that are more intense and some i didnt even have while on chemo.its been almost 3 wks since my last treatment,i called the onc and she said the side effects will get worse before it gets better.i know the tiredness will take a while to get over but the nuropothy has gotten worse and now my legs are cramping if i stay on them for to long.just wondering if this happened to you or any one else out there who has been finished for about a month or longer.thanks and Godbless......johnnybegood

Comments

  • colon2
    colon2 Member Posts: 183
    #2
    numbness
    I had folfox, (5 F-U and oxy) for 8 full treatments. The neuropathy became continuous after that. the onc cut the oxy back 25 percent on #9, and stopped it completely on #10. I just got #11 today, and even though i have had no oxy for the last 2 and a reduced dose before that, I atill have the neuropathy. It has not eased off yet. I am hoping it will go away soon. i read on one of these posts a while ago that it can last for quite awhile.
    They asked me today to participate in a new study they are doing on the leucovorin, based on the patients weight. They want to draw blood while I am on day 2 of fanny pack and test it. Oh well, I don't care. What's getting stuck 1 more time matter? Maybe somehow , someway it will make a difference to someone else fighting this cancer.
    Carletta
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    colon2 said:

    numbness
    I had folfox, (5 F-U and oxy) for 8 full treatments. The neuropathy became continuous after that. the onc cut the oxy back 25 percent on #9, and stopped it completely on #10. I just got #11 today, and even though i have had no oxy for the last 2 and a reduced dose before that, I atill have the neuropathy. It has not eased off yet. I am hoping it will go away soon. i read on one of these posts a while ago that it can last for quite awhile.
    They asked me today to participate in a new study they are doing on the leucovorin, based on the patients weight. They want to draw blood while I am on day 2 of fanny pack and test it. Oh well, I don't care. What's getting stuck 1 more time matter? Maybe somehow , someway it will make a difference to someone else fighting this cancer.
    Carletta

    Hope the neuropathy goes away for you
    Hi Carletta

    I sincerely hope the neuropathy goes away for you at some point and does not become permanent. I had to quit on #8 and the side effects mostly went away - but when I was on the treatment, that was always in the back of my mind.

    My onc kept telling that each one could become permanent and it always concerned me.

    I feel very fortunate in that regard. Let's hope that things will turn for you as well.

    -Craig
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #4
    Carletta
    There's two good sized threads on the first page of www.colonclub.com about achy legs, back, hips, etc. during chemo. Lots of people complaining about the same thing. Me too!
  • ADKer
    ADKer Member Posts: 147
    #5
    neuropathy
    I believe that I did 11 rounds of oxaliplatin before it was stopped due to neuropathy. I had moderate neuropathy in my feet and less in my hands. I had numbness on the bottoms of my feet and my toes felt like I just came inside after being out in the cold too long. It did get a little worse after treatment stopped but improved incrementally over time. Now, about 10 months later, I have almost nothing in my hands - maybe a little in the tips of a couple fingers on my left hand - and a little in my toes which rarely enough to be more than a minor background annoyance.

    If your neuropathy does not start to improve within 6-8 weeks, there are several treatments available that you should ask your onc about, such as lyrica, which are helpful to some people. Usually it improves on its own but not for everyone.
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #6
    ADKer said:

    neuropathy
    I believe that I did 11 rounds of oxaliplatin before it was stopped due to neuropathy. I had moderate neuropathy in my feet and less in my hands. I had numbness on the bottoms of my feet and my toes felt like I just came inside after being out in the cold too long. It did get a little worse after treatment stopped but improved incrementally over time. Now, about 10 months later, I have almost nothing in my hands - maybe a little in the tips of a couple fingers on my left hand - and a little in my toes which rarely enough to be more than a minor background annoyance.

    If your neuropathy does not start to improve within 6-8 weeks, there are several treatments available that you should ask your onc about, such as lyrica, which are helpful to some people. Usually it improves on its own but not for everyone.

    thanks
    everyone on your comments.you know i just love this site because i always feel like i have a second family and im not alone when it comes to being on the same meds or even the same side effects.i guess i always had it in my mind when i was done with chemo i would start feeling better.[ha] that stuff has fooled me its going to be in my system for a while and there is nothing i can do about it but sit and wait.some people say go on with your life and dont let the cancer run your life.well i am NED now and still feeling like i am still on that crap.when will this end and when will i have my life back.thanks again to all.Godbless.......johnnybegood
  • Patteee
    Patteee Member Posts: 945
    #7
    johnnybegood said:

    thanks
    everyone on your comments.you know i just love this site because i always feel like i have a second family and im not alone when it comes to being on the same meds or even the same side effects.i guess i always had it in my mind when i was done with chemo i would start feeling better.[ha] that stuff has fooled me its going to be in my system for a while and there is nothing i can do about it but sit and wait.some people say go on with your life and dont let the cancer run your life.well i am NED now and still feeling like i am still on that crap.when will this end and when will i have my life back.thanks again to all.Godbless.......johnnybegood

    My last chemo was in Jan,
    My last chemo was in Jan, almost 7 months ago. The feeling better comes over time and I am still trying to figure out what is normal. I still can't do much activity without feeling like I had the energy zapped out of me. Is the neuropathy better or have I just gotten used to it? dunno :) Took months for my fingernails and toenails to grow out- several toenails are still black. They also halted my oxil in Nov- and that change- wow- took a good 2 months before I could taste food again as well as the "going to faint" feeling to leave. My onc says ONE year to recover from chemo!
  • colon2
    colon2 Member Posts: 183
    #8
    Patteee said:

    My last chemo was in Jan,
    My last chemo was in Jan, almost 7 months ago. The feeling better comes over time and I am still trying to figure out what is normal. I still can't do much activity without feeling like I had the energy zapped out of me. Is the neuropathy better or have I just gotten used to it? dunno :) Took months for my fingernails and toenails to grow out- several toenails are still black. They also halted my oxil in Nov- and that change- wow- took a good 2 months before I could taste food again as well as the "going to faint" feeling to leave. My onc says ONE year to recover from chemo!

    finished #11 today.
    Well only one more to go. Thanks everybody for info on neuropathy. I will give it 6-8 weeks like you said, and see what's happening then. I hope it goes away. It is sad to hear the comment about it taking a year for chemo to go away. I want it to be over, just like everyone else. Seems like after the last treatment, we should be done. Guess it just doesn't work like that. Oh well, I really can't complain, because I'm almost done, and I can hardly wait to see if everything comes back looking good. I don't know if I will do the naked dance, or just jump for joy. I may do both, if results are good.
    Carletta
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
    colon2 said:

    finished #11 today.
    Well only one more to go. Thanks everybody for info on neuropathy. I will give it 6-8 weeks like you said, and see what's happening then. I hope it goes away. It is sad to hear the comment about it taking a year for chemo to go away. I want it to be over, just like everyone else. Seems like after the last treatment, we should be done. Guess it just doesn't work like that. Oh well, I really can't complain, because I'm almost done, and I can hardly wait to see if everything comes back looking good. I don't know if I will do the naked dance, or just jump for joy. I may do both, if results are good.
    Carletta

    good for you
    keep on going your almost there.my onc stopped me at 10 that was 3 weeks ago and still have to take pain meds to even feel half way decent.its sad what they dont tell you.its like you have to find out for your self.i to thought when chemo was over i was done and i could go on living[not].good luck to you it wont be long now....Godbless......johnnybegood

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