Reduction in chemo drugs

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llb1601
llb1601 Member Posts: 8
edited March 2014 in Colorectal Cancer #1
For the sixth chemo treatment of 5-FU and Oxiplatin, the Oxiplatin was not given due to unusual side effect - I gagged every time I tried to take in liquids and my voice was affected and I had a strange feeling in my throat all the time. Felt miserable for nine days after treatment. I am getting chemo every other Monday for a total of 12 treatments. I am concerned about the effectiveness of the chemo due to not getting Oxiplatin. The oncologist said his job was to weight the risks against the benefits and was concerned about long term damage. Has anyone had their chemo change like this and been told how the effectiveness would change? I have an appointment with the oncologist before my next treatment and would like to know of other options anyone might have had due to not being able to tolerate Oxiplatin. He told me he never had another patient with this extreme side effect.

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  • Faith88
    Faith88 Member Posts: 55
    #2
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    hello,
    i wanted to say that my husband went through the same treatment and had those exact symptoms you're describing. His voice would change and he said his throat would feel funny, and also gagged.(not sure when that started though, which treatment it was exactly)
    He kept on them though until treatment #10 when the nerve pain in his hands got to be too bad. He finished the other two treatments without the oxy, and now has nerve damage still almost 6 months later.
    He was Stage 3C though and the onc felt he wanted to give him the best which included the dreaded oxiplatin.
    What stage are you? It may be better to omit the oxiplatin -I don't know of any statistics showing the decrease in effectiveness but maybe others do.
    Best wishes and I hope the rest of your treatment goes smoothly.
    -Faith88
  • omnonk
    omnonk Member Posts: 6
    #3
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    I am sorry you going through these problems,my husband had similar side effects but not so bad that he had to stop avastin all the problems cleared when he finished his 15 rounds.Keeping you in my thoughts.
  • sladich
    sladich Member Posts: 429 Member
    #4
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    I was able to finish the oxialaplatin but I still have neuropathy in my fingertips and feet. Everyone is different and it is not proven that you must have 12 treatments.

    Debbie
  • cahalstead
    cahalstead Member Posts: 118
    #5
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    Just wanted to share my experience with oxaliplatin.

    I had bad side effects from it also but not like yours. My legs were giving out on me, my brain wanted my legs to move but I would have to make a conscious effort at times to get them to go. My onc told me that he felt the risk of damage was getting too great and I had to end the oxy after the 5th treatment. I had numbness in my hands & feet but they are mostly normal now. My treatments ended last September.

    I was concerned about the effectiveness of the chemo but he said that there's no proof that we have to have 12 treatments, he said 5 may be all I need.

    Try not to worry too much, there's not much we can do when the risk of permanent damage is there. I'm just enjoying my days and thankful that I'm feeling so much better.

    Take good care of yourself.
  • pamness
    pamness Member Posts: 524 Member
    #6
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    I don't know what stage you were. I was 3A - I was supposed to do 8 rounds of folfox - they reduced my oxaliplatin after the first round because I was so sick and discontinued it after the fifth round. I finished the 5fu and after that the radiation and 5fu. My oncologist explained to me that no one actually knows how much oxaliplatin it takes to be effective - they know the most they need to give that people can tolerate - but who wants to participate in a study that finds out if less works just as well. Oxali hasn't been used that long and it will be a long time until they have all the data. Remember the colon cancer was treated fairly effectively with just 5
    FU
    and leukovorian and radiation until 5 or so years ago. I am currently NED and am comfortable my oncologist made the right decision. Not only did I finish only 5 rounds of oxali but it was reduced three times. I was willing to go on, but was not given the choice. I didn't have the symptoms you describe, but I was too sick to function and developed neuropathy that wasn't going away. It is gone now.

    Pam
  • rmap59
    rmap59 Member Posts: 266
    #7
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    Hi,
    My experience with oxaliplatin was hard also. I started out with surgery, chemo pills and radiation and then chemo pills and IV's of oxaliplatin every 3 weeks for 4 rounds. Everytime after the IV I would say no more but would go back when time. I was lucky to only have 4 IV's of that stuff, however the dose was very high 200mg when most people get from 85 to 130mg but my onc said I was young and healthy enough to take it. I barely did. Anyway, one thing that helped me was my onc made the drip time longer, instead of receiving over a 2 hour period he upped it to 3 hours, this helped, still no picnic but you might ask about that. Otherwise I am sure your onc will take care of you and the right thing will be done.
    Robin
  • llb1601
    llb1601 Member Posts: 8
    #8
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    Faith88 said:

    hello,
    i wanted to say that my husband went through the same treatment and had those exact symptoms you're describing. His voice would change and he said his throat would feel funny, and also gagged.(not sure when that started though, which treatment it was exactly)
    He kept on them though until treatment #10 when the nerve pain in his hands got to be too bad. He finished the other two treatments without the oxy, and now has nerve damage still almost 6 months later.
    He was Stage 3C though and the onc felt he wanted to give him the best which included the dreaded oxiplatin.
    What stage are you? It may be better to omit the oxiplatin -I don't know of any statistics showing the decrease in effectiveness but maybe others do.
    Best wishes and I hope the rest of your treatment goes smoothly.
    -Faith88

    Hi Faith,
    Thanks for the reply. Mine is Stage 111A. The tumor did not go through the wall, but cancer was found in 2 out of 16 lymph nodes. This is preventive chemo. There is such a huge difference regarding the side effects with out the dreaded oxy. I have no reaction to cold, no rash, no nausea and no problem with drinking liquids. I am concerned, however, on the effectiveness without the oxy. I guess I'll find out when I go on 4/28/08.

    Thanks for your wishes. It means so much to hear from people who are caregivers or are going through the process!
  • llb1601
    llb1601 Member Posts: 8
    #9
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    pamness said:

    I don't know what stage you were. I was 3A - I was supposed to do 8 rounds of folfox - they reduced my oxaliplatin after the first round because I was so sick and discontinued it after the fifth round. I finished the 5fu and after that the radiation and 5fu. My oncologist explained to me that no one actually knows how much oxaliplatin it takes to be effective - they know the most they need to give that people can tolerate - but who wants to participate in a study that finds out if less works just as well. Oxali hasn't been used that long and it will be a long time until they have all the data. Remember the colon cancer was treated fairly effectively with just 5
    FU
    and leukovorian and radiation until 5 or so years ago. I am currently NED and am comfortable my oncologist made the right decision. Not only did I finish only 5 rounds of oxali but it was reduced three times. I was willing to go on, but was not given the choice. I didn't have the symptoms you describe, but I was too sick to function and developed neuropathy that wasn't going away. It is gone now.

    Pam

    Hi Pamness,
    I am 3A, and am supposed to do 12 rounds of folfox. The oncologist did reduce it after the 3rd round but the side effects worsened. I sincerely appreciate your sharing your experience with me. It isn't so much the neuropathy, although that was getting more intense and lasting longer with each cycle, but it was the inability to drink and the effect it was having on my throat. Thank you!
  • llb1601
    llb1601 Member Posts: 8
    #10
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    Thanks to everyone who shared their experiences with me. I am very new to this site and find it comforting to read about what others are going through with their cancer, whether as a caregiver or the patient. I hope to find out more at my next appointment.
  • pamness
    pamness Member Posts: 524 Member
    #11
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    rmap59 said:

    Hi,
    My experience with oxaliplatin was hard also. I started out with surgery, chemo pills and radiation and then chemo pills and IV's of oxaliplatin every 3 weeks for 4 rounds. Everytime after the IV I would say no more but would go back when time. I was lucky to only have 4 IV's of that stuff, however the dose was very high 200mg when most people get from 85 to 130mg but my onc said I was young and healthy enough to take it. I barely did. Anyway, one thing that helped me was my onc made the drip time longer, instead of receiving over a 2 hour period he upped it to 3 hours, this helped, still no picnic but you might ask about that. Otherwise I am sure your onc will take care of you and the right thing will be done.
    Robin

    Hey Robin - how you feeling. 200 mg? Wow, I couldn't tolerated the 85 mg - although I did it every two weeks but I only made 5 rounds - most of them reduced. I did all the 5fu and rads. I was so sick at 85 mg - I couldn't function.

    Pam
  • impactzone
    impactzone Member Posts: 551 Member
    #12
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    llb1601 said:

    Thanks to everyone who shared their experiences with me. I am very new to this site and find it comforting to read about what others are going through with their cancer, whether as a caregiver or the patient. I hope to find out more at my next appointment.

    Stage 4 6 month sof chemo with oxy and that stopped in 6/07. I still have issues with my feet. The infusion time lengthed seemed to help that last couple of cycles. I also drank so much water that I almost got sick of the stuff, trying to flush my system. good luck!
    Impactzone

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