need some opinions please

johnnybegood
johnnybegood Member Posts: 1,117 Member
edited March 2014 in Colorectal Cancer #1
well where do i start.went to surgen monday for a 3 month check up.all was fine with the ct scan.he talked to me about the chemo and since i had 5 out of 10 nodes that showed bad cells we both agreed for me to hang in there and do all 12 treatments.then on tuesday i go to my onc to get chemo.told her i was still having hard time with side effects i usually dont start feeling good til 1to2 days before i have to go back.so then she proceeds to tell me that i can stop treatments at #10 if i wanted to.she said 10 has been proven to be sufficient enough.so what do you do.i hate this chemo i feel as if it is killing me.one doctor tells you one thing and another tells you something else.all opinions will be appriciated because i am very confused.thank you Godbless.......johnnybegood

Comments

  • nudgie
    nudgie Member Posts: 1,478 Member
    #2
    My opinion
    I am not sure what Stage of cancer you had, but I was DX with Stage II colon cancer with no lymph node involvement or signs of spreading. My Onc told me that Industry Standard for Stage II (2006) was to have adjunt chemotherapy for insurance purposes just in case there were some micro cancer cells running around, so I took is advice and started on the FLOFOX Regime of 5FU, Leucovorin (sp?) and Oxy every other week.

    I started on 18 August 06 and finished in sometime in October 06. During the treatments, the side effects were mounting with each treatment, so my Onc stated that it was also industry standard to reduce the chemo by 20% and it would not change the affect, so again, I took is advice and pushed forward. At the 6th treatment I had hives which was a sign of an allergic reaction. Finished that round in the hospital for precaution.

    I stopped at number 6. It was a decision I had to make and one that I would not later second guess. I spoke with the doctors, family, friends, etc., and felt that my body was telling me enough.

    I would recommend that you speak with your onc about all the side effects, what about reducing said regime and affects it would have your cancer, and than determine your next step.

    I hope this helps
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #3
    nudgie said:

    My opinion
    I am not sure what Stage of cancer you had, but I was DX with Stage II colon cancer with no lymph node involvement or signs of spreading. My Onc told me that Industry Standard for Stage II (2006) was to have adjunt chemotherapy for insurance purposes just in case there were some micro cancer cells running around, so I took is advice and started on the FLOFOX Regime of 5FU, Leucovorin (sp?) and Oxy every other week.

    I started on 18 August 06 and finished in sometime in October 06. During the treatments, the side effects were mounting with each treatment, so my Onc stated that it was also industry standard to reduce the chemo by 20% and it would not change the affect, so again, I took is advice and pushed forward. At the 6th treatment I had hives which was a sign of an allergic reaction. Finished that round in the hospital for precaution.

    I stopped at number 6. It was a decision I had to make and one that I would not later second guess. I spoke with the doctors, family, friends, etc., and felt that my body was telling me enough.

    I would recommend that you speak with your onc about all the side effects, what about reducing said regime and affects it would have your cancer, and than determine your next step.

    I hope this helps

    thanks
    for your opinion i was dx in sept 08 stage lll with 5 lyph involvrd.my onc has already reduced the 5fu and it has helped some as far as my throat sweeling.i just started #7yesterday and will get unhooked tomarrow.there has been no talk about insurance she just said 10 would be sufficient if i was feeling to bad.of course she said if i was doing ok then we would still shoot for #12[bummer]well gotta go lay down now this sh$$ is killing me and #10 sounds so close.thanks again and Godbless....johnnybegood
  • eric38
    eric38 Member Posts: 583
    #4
    johnnybegood said:

    thanks
    for your opinion i was dx in sept 08 stage lll with 5 lyph involvrd.my onc has already reduced the 5fu and it has helped some as far as my throat sweeling.i just started #7yesterday and will get unhooked tomarrow.there has been no talk about insurance she just said 10 would be sufficient if i was feeling to bad.of course she said if i was doing ok then we would still shoot for #12[bummer]well gotta go lay down now this sh$$ is killing me and #10 sounds so close.thanks again and Godbless....johnnybegood

    Easy for me to say because I
    Easy for me to say because I am not you but I am on the same program. Probably not the same exact drugs. I realize the severity varies by the person and the exact drugs although none of it is very fun. My opinion is to suck it up for the last two treatments and make sure all of the cancer is out of your system. There`s a reason they prescribe 12 treatments. You might be able to get by with ten treatments but those last two would be like insurance. Again it`s your body and if you are really sick I can see why would want to stop early. Some people can only tolerate 6 treatments. I know you are looking forward to the end of it and so am I and the light at the end of the tunnel is nearing especially if you quit a little early but I figure why take chances? But that`s just my own opinion and I am certainly no expert. If your oncologist tells you that you can get by with ten then you probably can but I`m sure she would probably tell you that you`d be better off with twelve. Not what you wanted to hear, I`m sure but that`s just the lowly opinion of a fellow future cancer survivor which I`m sure we both will be.
    Eric
  • lesvanb
    lesvanb Member Posts: 905
    #5
    Another opinion
    I just finished my adjuvant therapy and completed 10 cycles of adjuvant FOLFOX (5FU, leukovorin, oxaliplatin). Since I had a total of 2 cycles of oxaliplatin/xeloda neoadjuvant before surgeries, my medical oncologist at the Huntsman Cancer institute, who does the second opinions, recommended 9-12 cycles adjuvant depending on how I did. Technically then I did 12 cycles. He also said that there is no hard or fast rule for exactly how many cycles is best, especially with rectal cancer since the trials and stats are fewer. Often people do just 6 cycles for rectal cancer. We also held doing Avastin for the adjuvant since I was NED after surgery. My primary medical oncologist held the oxaliplatin on #8 because of the increasing neuropathy and grade 3 diarrhea. My rectal cancer is stage 4, one met to the liver, NED after liver resection surgery. No lymph node involvement. I have pins and needles neuropathy on the soles of my feet 24/7; very annoying but with little pain. Hopefully that will diminish over time.

    Leslie
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
    lesvanb said:

    Another opinion
    I just finished my adjuvant therapy and completed 10 cycles of adjuvant FOLFOX (5FU, leukovorin, oxaliplatin). Since I had a total of 2 cycles of oxaliplatin/xeloda neoadjuvant before surgeries, my medical oncologist at the Huntsman Cancer institute, who does the second opinions, recommended 9-12 cycles adjuvant depending on how I did. Technically then I did 12 cycles. He also said that there is no hard or fast rule for exactly how many cycles is best, especially with rectal cancer since the trials and stats are fewer. Often people do just 6 cycles for rectal cancer. We also held doing Avastin for the adjuvant since I was NED after surgery. My primary medical oncologist held the oxaliplatin on #8 because of the increasing neuropathy and grade 3 diarrhea. My rectal cancer is stage 4, one met to the liver, NED after liver resection surgery. No lymph node involvement. I have pins and needles neuropathy on the soles of my feet 24/7; very annoying but with little pain. Hopefully that will diminish over time.

    Leslie

    Same here............
    I started out with bad nausea and it never got much better throughout...In the 6th and 7th treatment I started having neuropathy that didn't go away by the next treatment...I decided that #10 was enough of the oxilaplatin...I did finish all 12 treatments but the last 2 were without the oxil and the nausea was not there at all..I stopped the oxil because of the numb fingertips (that are getting slightly better now) and the feet and pads that are tingling as Lesvanbs are .....nothing I can't live with either but these are options that you have to make for yourself....I didn't want to stop at 10 treatments then have something return and always second guess myself, but I did drop the Oxil the last 2 and it was lot easier, almost like not having treatment at all....The oxil is the assailant in the Folfox regimen...It is also the Cancer killer....I only made the choices for myself...its your choice.....you'll make the right one im sure........
  • dorookie
    dorookie Member Posts: 1,731 Member
    #7
    MY Opinion
    WEll for me it was a bit different, I went in to see my ONC right before my last treatment Number 12. WEll that was when I was told I was NED and that the cancer was gone. I asked if I needed to do the last treatment, he said well if it were my relative I would have them do it but it was up to me. My sister and partner were there and the begged me to do it, a just in case last treatment, well I ended up doing it. And guess what the cancer came back 6 months later. So in my opinion, you just have to do whats best for you. I know they say 12 is recommended but it didnt work for me. I dont want to be negative that is not what I am trying to say. I am just sharing my experience with doing the last treatment.

    Good luck to you...my prayers will be with you.

    Beth
  • maglets
    maglets Member Posts: 2,576 Member
    #8
    dorookie said:

    MY Opinion
    WEll for me it was a bit different, I went in to see my ONC right before my last treatment Number 12. WEll that was when I was told I was NED and that the cancer was gone. I asked if I needed to do the last treatment, he said well if it were my relative I would have them do it but it was up to me. My sister and partner were there and the begged me to do it, a just in case last treatment, well I ended up doing it. And guess what the cancer came back 6 months later. So in my opinion, you just have to do whats best for you. I know they say 12 is recommended but it didnt work for me. I dont want to be negative that is not what I am trying to say. I am just sharing my experience with doing the last treatment.

    Good luck to you...my prayers will be with you.

    Beth

    chemo
    oh Johnny I am so sorry you are having such a hard time. re your decision I have done 3 sets of chemo and finished but like Beth I had re-occurence anyway.

    On this last round of oxy and xeloda I was slated for 6 rounds. I absolutely hit the wall after the oxy6 and ended up dropping the last 7 days of xeloda. My doctor said do not think of chemo as a bridge across the big cancer valley. You can get safely to the other side with or without all of that chemo....it is not always the bridge over the valley.

    She also said sometimes you just get too sick to go on...and then you up your chances for catching another type of infection. She also said never never beat yourself up thinking....if i had only finished. Just some thoughts...

    Best wishes....you will make the decision when you get there.

    mags
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #9
    maglets said:

    chemo
    oh Johnny I am so sorry you are having such a hard time. re your decision I have done 3 sets of chemo and finished but like Beth I had re-occurence anyway.

    On this last round of oxy and xeloda I was slated for 6 rounds. I absolutely hit the wall after the oxy6 and ended up dropping the last 7 days of xeloda. My doctor said do not think of chemo as a bridge across the big cancer valley. You can get safely to the other side with or without all of that chemo....it is not always the bridge over the valley.

    She also said sometimes you just get too sick to go on...and then you up your chances for catching another type of infection. She also said never never beat yourself up thinking....if i had only finished. Just some thoughts...

    Best wishes....you will make the decision when you get there.

    mags

    thank you
    everyone for your opinions and support.yes i know it is my decision and who knows maybe after #10 and i am no sicker than i am now i will just go ahead and do the last 2.i guess to sum it all up i am sick and tired of being sick and tired,i started feeling bad in july of 08 didnt know really what was going on.just thought i was constpated,finally went to docter and was dx in sept08 so i have already had a long journey.dont mean to whine i know a lot of others have had longer journeys than me.i just want to be the active person i was.riding my horses,going to the lake and riding our seadoo[so much fun] the more i think about it how am i going to be bounced around in the cold water witch i probaly could not take the cold or the air blowing in my face with this swollen throat.im scared to ride my horse as he likes to throw his head up and it takes a bit of strength to hold and guide the reigns,so i dont want to damage my port in any way.again thanks to everyone i guess i just get depressed when i have to go for treatment,just tired of being sick,Godbless to all......johnnybegood
  • NWGirl
    NWGirl Member Posts: 122 Member
    #10
    10 FOLFOX - 2 Xeloda
    I made it through 10 FOLFOX treatments - then had to have my port removed due to complications. I also had 30 radiation treatments, with the 5FU going 24/7 for 6 weeks during that time. By treatment #10 I was soooooo sick. My oncologist decided to finish the last 2 rounds with Xeloda only. A part of me wanted to tough it out and take 2 more rounds with the Oxi, but another part of me was so glad to be done with it.

    Xeloda by itself felt like a chemo vacation - nothing like having the Oxi in the mix.

    By the way, I was also stage 3 with 27 of 38 nodes affected. I finished treatment in September 2008 and knock on wood, I'm still NED. However, my doctor is doing CT scans and blood work every 3 months - at least for the first year. During treatment, any little "thing" that popped up that might inidicate a spread of disease he took very seriously and really watched me like a hawk.

    Best of luck. I think we can all relate to "sick of being sick".
  • kmygil
    kmygil Member Posts: 876 Member
    #11
    Nine was my #
    Hey there! Even after a reduction in strength after # 5 or 6, the side effects laid me so low that with my onc's full agreement, we stopped after #9. There was some symposium a while back where they were actually talking of making the adjunct chemo a regimen of 9 instead of 12, so I don't feel bad. Of course, this all depends on stage etc. I was II-b, which meant that my chemo was essentially "insurance." When you are a higher stage that may not be the case. Either way, if you trust your oncologist, go with that; otherwise, get another opinion and do what you feel is best for you. It's your life and only you can make the call where you feel comfortable. Good luck and God bless.

    Hugs,
    Kirsten

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