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Need advise on Chemo!

TMac52
TMac52 Member Posts: 352
edited March 2014 in Colorectal Cancer #1
I took my 3rd dose of folfox on Monday. It has been a tough week, side effects are a lot worse this time. I am debating whether or not to continue after round 4 (I am sheduled for 8 rounds) I just re-read my pathology report and dont know if the chemo is doing more bad than good. The tumor was removed along with my rectum and anal canal. There was no sign of carsinoma in the margins or 4 lymph nodes that were removed. No metastasis, the Kras and braf mutation analysis negative. Stage 1. I was told by my onc that it was up to me to start the mop up chemo, i thought I should be safe than sorry however the more i read the more i am confused. Could the chemo be doing more harm to my liver and other organs than good? Any feedback would be appreciated.
Tom
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Comments

  • coloCan
    coloCan Member Posts: 1,944 **
    Its probably the oxi thats getting to you,
    As another alternative, onc can reduce or eliminate totally the oxi from the FOLFOX, which, of course, is no longer FOLFOX but its much easier on you that way, or it was for me. Did 5 doses oxi preop, but could tolerate only 4 of 8 of FOLFOX with oxi after surgery.....If you're stage I, you may not need it at all; I was/am Stage 3....steve
  • plh4gail
    plh4gail Member Posts: 1,238
    It is hard.
    Tom, my third chemo was also harder and from what I understand it will more than likely continue to get worse. I don't know how bad your symptom's are, I only know that I take my days one at a time and my sypmtoms as they come. We are at the same place with number of treatments and I know each time I have felt a new things. I don't like it. My diagnosis is different than you in that I had lymph nodes involved, half of the ones removed. I am 3C and have 12 rounds total to do. One more treatment and you are half way there if you decide to stay with the treatment. I will support either of your decisions.

    Your treatment buddy, Gail
  • TMac52
    TMac52 Member Posts: 352
    plh4gail said:

    It is hard.
    Tom, my third chemo was also harder and from what I understand it will more than likely continue to get worse. I don't know how bad your symptom's are, I only know that I take my days one at a time and my sypmtoms as they come. We are at the same place with number of treatments and I know each time I have felt a new things. I don't like it. My diagnosis is different than you in that I had lymph nodes involved, half of the ones removed. I am 3C and have 12 rounds total to do. One more treatment and you are half way there if you decide to stay with the treatment. I will support either of your decisions.

    Your treatment buddy, Gail

    Thanks Steve and Gail.
    I wish it were more definative onc leaves it up to me????? What the #$&# Do I know.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    plh4gail said:

    It is hard.
    Tom, my third chemo was also harder and from what I understand it will more than likely continue to get worse. I don't know how bad your symptom's are, I only know that I take my days one at a time and my sypmtoms as they come. We are at the same place with number of treatments and I know each time I have felt a new things. I don't like it. My diagnosis is different than you in that I had lymph nodes involved, half of the ones removed. I am 3C and have 12 rounds total to do. One more treatment and you are half way there if you decide to stay with the treatment. I will support either of your decisions.

    Your treatment buddy, Gail

    run all the side effects by the onc , take their advice.
    i am like gail, 3c as well. clear margin and 3 positive nodes.
    about to do 6 of 12 folfox tuesday
    my folfox has been ok so far, besides little t ingles,thankyou god.
    i am nervous given everyones elses problems though.

    my real life friend was stage 2, no nodes positive, but was advised to 12 folfox, made about half of them and her onc pulled oxali as nerve damage not worth it. i had a second opinion from her onc, so i meet him and was impressed. so be guided by a well informed onc.
    i see my onc every cycle day before hit, so we have blood test results and can adjust dose.

    i hope your cure is not worse than than the illness. you sound similar to my friend.

    hope you are feeling better,

    pete your treatment buddy from downunder

    ps do a post with side effects like alot of us
    we have been refering to the treatments as the folfox express.
    ie could mean a train that runs you over, or in my case a scary theme park ride.

    the main thing is many of us are on the journey.
    got to get up and juice, do yoga, tcm and vitamins.
    maybe some or all of these are helping
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    TMac52 said:

    Thanks Steve and Gail.
    I wish it were more definative onc leaves it up to me????? What the #$&# Do I know.

    avoid permanent nerve damage main checkpoint
    others may have more relevant experience, i hope they comment

    i think this is a big side effect to avoid,
    your bloods maybe ok after 3 cycles, mine at 6 tell the chemo story, most below normal levels.

    real healthy diet, no alcohol, plenty of water and milk thistle are all good things to help liver.

    cheers,

    pete
  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Decisions
    That is a hard decision and only one that you can make. Just make sure your decision is not one of "should of, would of, could of" because you don't want to be kicking yourself, and that is for either decision. Folfox does get harder each time you get it and the third one was really hard on me too. I'm still dealing with neuropathy but it is getting much better, except when in cold weather, then my feet really bother me. Good luck on you decision.

    Kim
  • TMac52
    TMac52 Member Posts: 352

    Decisions
    That is a hard decision and only one that you can make. Just make sure your decision is not one of "should of, would of, could of" because you don't want to be kicking yourself, and that is for either decision. Folfox does get harder each time you get it and the third one was really hard on me too. I'm still dealing with neuropathy but it is getting much better, except when in cold weather, then my feet really bother me. Good luck on you decision.

    Kim

    Thanks Kim and Pete!
    I will bring up the subject with my onc again next round.
  • 2bhealed
    2bhealed Member Posts: 2,064
    Other choices
    Hi Tom,

    I chose to not do chemo for many reasons but here were some:

    chemo induced secondary cancers
    chemo induced permanent kidney and/or lung damage
    chemo induced peripheral neuropathy
    chemo induced leukemia

    etc etc etc

    That's not even counting the chemo induced diarrhea, dehydration, mouth sores, rashes, hair loss etc....

    My tumor did not give off a CEA so my onc would not have had any way to measure if the chemo was working or not. Given the fact that no one in my family had survived chemo or cancer, I opted to go an alternate route using Eastern medicine (TCM), diet, yoga and many other healing modalities to heal my cancer. I was Stage III colon with 2/19 lymph pos and zero mets.

    Thankfully my Mayo Clinic oncologist supported me even though I made my decision to opt out of doing any chemo.

    Perhaps get a juicer and do CHEMIA (juice of the plant) instead.

    Check out www.crazysexycancer.com Kris Carr has an amazing testimony about her cancer journey and juicing.

    My tumor was in my sigmoid colon. I don't know anything about rectum or anal....

    peace, emily

    p.s. I have remained cancer free for 9 1/2 years having never done any chemo.
  • TMac52
    TMac52 Member Posts: 352
    2bhealed said:

    Other choices
    Hi Tom,

    I chose to not do chemo for many reasons but here were some:

    chemo induced secondary cancers
    chemo induced permanent kidney and/or lung damage
    chemo induced peripheral neuropathy
    chemo induced leukemia

    etc etc etc

    That's not even counting the chemo induced diarrhea, dehydration, mouth sores, rashes, hair loss etc....

    My tumor did not give off a CEA so my onc would not have had any way to measure if the chemo was working or not. Given the fact that no one in my family had survived chemo or cancer, I opted to go an alternate route using Eastern medicine (TCM), diet, yoga and many other healing modalities to heal my cancer. I was Stage III colon with 2/19 lymph pos and zero mets.

    Thankfully my Mayo Clinic oncologist supported me even though I made my decision to opt out of doing any chemo.

    Perhaps get a juicer and do CHEMIA (juice of the plant) instead.

    Check out www.crazysexycancer.com Kris Carr has an amazing testimony about her cancer journey and juicing.

    My tumor was in my sigmoid colon. I don't know anything about rectum or anal....

    peace, emily

    p.s. I have remained cancer free for 9 1/2 years having never done any chemo.

    Thanks Emily!
    This is what I was hoping to hear. Thank you I will do some research on this I really appreciate the info.
    And Congrats on 9 1/2 years cancer free WOO HOO !!!
    Tom
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    Chemo
    I was stage 3b/3 positive lymph nodes out of 30. Right ascending colon. I took 7 of 12 folfox. Last treatment 5/09. Taken off due to reaction. I felt fine the day I started chemo and have never been the same since, but I am alive. Still have numb feet/leg, hands and very tired. I can not advice you what to do, but there are consequences to chemo for some people. Stage 1 is different than 3, in fact my onc probably would have not recommended it. It is a very personal decision what to do, but do have a serious conversation with your onc. Just wanted to address your question of harm from chemo. I also did not have the rectum involvement which can possibly change an onc attitude about chemo. Good luck with your decision. Pat
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    Chemo
    I was stage 3b/3 positive lymph nodes out of 30. Right ascending colon. I took 7 of 12 folfox. Last treatment 5/09. Taken off due to reaction. I felt fine the day I started chemo and have never been the same since, but I am alive. Still have numb feet/leg, hands and very tired. I can not advice you what to do, but there are consequences to chemo for some people. Stage 1 is different than 3, in fact my onc probably would have not recommended it. It is a very personal decision what to do, but do have a serious conversation with your onc. Just wanted to address your question of harm from chemo. I also did not have the rectum involvement which can possibly change an onc attitude about chemo. Good luck with your decision. Pat
  • John23
    John23 Member Posts: 2,122
    TMac52 said:

    Thanks Emily!
    This is what I was hoping to hear. Thank you I will do some research on this I really appreciate the info.
    And Congrats on 9 1/2 years cancer free WOO HOO !!!
    Tom

    Tom -

    You can click on my name to the right, and read my profile,
    and the "blog" portion.

    There -are- options and alternative routes to take.

    Best of health,

    John
  • TMac52
    TMac52 Member Posts: 352
    John23 said:

    Tom -

    You can click on my name to the right, and read my profile,
    and the "blog" portion.

    There -are- options and alternative routes to take.

    Best of health,

    John

    John 23 Thanks!
    Hi John,
    I have read a bunch of your post's but didnt realize what treatments you have chosen. The fact that you have taken an alternate route and have been sucsessful is very interesting. I have thought for years about eating healthier and juicing however it takes such disipline I just didnt have the drive to do it. But now things have changed. Cancer will change your attitude about things. I will def do the research and talk with my onc.
    Tom
  • Buzzard
    Buzzard Member Posts: 3,043

    Chemo
    I was stage 3b/3 positive lymph nodes out of 30. Right ascending colon. I took 7 of 12 folfox. Last treatment 5/09. Taken off due to reaction. I felt fine the day I started chemo and have never been the same since, but I am alive. Still have numb feet/leg, hands and very tired. I can not advice you what to do, but there are consequences to chemo for some people. Stage 1 is different than 3, in fact my onc probably would have not recommended it. It is a very personal decision what to do, but do have a serious conversation with your onc. Just wanted to address your question of harm from chemo. I also did not have the rectum involvement which can possibly change an onc attitude about chemo. Good luck with your decision. Pat

    TMac52
    Not gonna tell ya what to do...simply my choice I took.....I don't know whats best, everyone has opinions and we all hope in the end that we did or are doing the right thing. Juicing worked very well for Emily and John and they have great extended periods of NED to show that...Chemo is simply another option, one that yes the higher percentage of people do take chemo treatments, but until there is actual proof that either juicing or chemo is one better than another is proven to me then I have to walk my own path. I did chemo, but yet I did re occur, met to lung, would juicing have prevented that, no way to tell, but juicing will help you in having the healthiest body system possible, whether you do chemo or not, diet is essential to good health and juicing is good health at its finest.
    In any rate, I did chemo, Folfox as well, and did 10 rounds with OXY and the last 2 without...The neuropathy in my fingers is completely gone, the toes, well, the middle 3 on each foot are still numb. It has taken over 2 years of my life after chemo and my 1st surgery to get back to where I started to feel halfway normal again. Somethings never get back to normal, but the new normal is ok too...I learn to adapt pretty quickly to most everything. Am I sorry I did the Folfox ? absolutely not...would I do it again ? absolutely, and puke as much as I did last time, but, to be sick for 2 years and still be alive was it worth it? absolutely.......if you are contemplating quitting, I simply weighed out what my life would be like with my fingers numb, then my toes numb. Could I cope with that, absolutely.....I know you didn't get any sicker than I did with it, gag, puke, couldn't eat hardly squat, everything smelled awful that was great the day before treatment, the the week after treatment started to feel better on Sunday and by the end of the 2nd week, time to start chemo again, I was gonna do just one more, and I did this each time until one day it was over, and I had done everything possible to keep it at bay. Will I do it again if I have to, I think only now because I have a family and loved ones that want me to stick around as long as possible. I never want to look back and say, "Damn" I should've........and I won't..........May your choices be the best for you for they are yours to make........and you will make the right ones.....Love and Hope for you and yours, Buzz
  • djm_2010
    djm_2010 Member Posts: 52
    Hello Tom, I think it's the
    Hello Tom, I think it's the oxilaplatin that's causing your side effects. I am also dx with stage 1 rectal cancer but i was given by my onc xelox chemo. That is xeloda tabs for 14 days and oxaplatin iv infusion as pod every 21 days. I had my 2nd dose last Jan 13 and after that infusion I really felt bad and can't hardly walk due to the neuropathy. I also had tremors all over and really felt weak. I just take it one day at a time,now feel better and just psyche myself again for the nxt dose. I was about to be given folfox before but my doctor gave me the option of the xelox which at least I won't be admitted at the hospital for 3 days ( I really don't want to see the hospital forever ) and I would have a life and be able to work since my meds are oral. It's your decision if you want to stop your chemo but remember if by chance the cancer comes back you would have a hard tome fighting it because you might be immune to the folfox therapy. Just hang on, pray and take one day at a time. I still have 6 cycles to go and am determined to fight this cancer because my kids are still small and needs me. The one thin I hate and get more depressed abbot is my colostomy bag. I really hate it but I want to live longer and have to deal with it. Take care and God Bless you! From dina
  • djm_2010 said:

    Hello Tom, I think it's the
    Hello Tom, I think it's the oxilaplatin that's causing your side effects. I am also dx with stage 1 rectal cancer but i was given by my onc xelox chemo. That is xeloda tabs for 14 days and oxaplatin iv infusion as pod every 21 days. I had my 2nd dose last Jan 13 and after that infusion I really felt bad and can't hardly walk due to the neuropathy. I also had tremors all over and really felt weak. I just take it one day at a time,now feel better and just psyche myself again for the nxt dose. I was about to be given folfox before but my doctor gave me the option of the xelox which at least I won't be admitted at the hospital for 3 days ( I really don't want to see the hospital forever ) and I would have a life and be able to work since my meds are oral. It's your decision if you want to stop your chemo but remember if by chance the cancer comes back you would have a hard tome fighting it because you might be immune to the folfox therapy. Just hang on, pray and take one day at a time. I still have 6 cycles to go and am determined to fight this cancer because my kids are still small and needs me. The one thin I hate and get more depressed abbot is my colostomy bag. I really hate it but I want to live longer and have to deal with it. Take care and God Bless you! From dina

    This comment has been removed by the Moderator
  • John23
    John23 Member Posts: 2,122
    unknown said:

    This comment has been removed by the Moderator

    Gracie -

    Irrigation for Colostomates is just as popular here. It's not
    for everyone, since there can be problems with infection, etc.,
    but you can learn how common the practice is, by going to the
    UOAA website and searching.

    UOAA Forum

    UOAA Colostomy Irrigation


    Good luck; better health!

    John
  • John23 said:

    Gracie -

    Irrigation for Colostomates is just as popular here. It's not
    for everyone, since there can be problems with infection, etc.,
    but you can learn how common the practice is, by going to the
    UOAA website and searching.

    UOAA Forum

    UOAA Colostomy Irrigation


    Good luck; better health!

    John

    This comment has been removed by the Moderator
  • thxmiker
    thxmiker Member Posts: 1,278
    increase your chances
    It goes to the debate are there Elephants hiding in a strawberry field. Do they hide that good? or Are they never there?

    I went with Chemo to increase my chances that if there is a really small tumor that got missed, then the Chemo will kick its hiney!

    I am on my second round of Cancer. I have Signet Ring Cell cancer. I want it out of me or the chances lowered for reoccurrence. Chemo sucks, but the alternative is worse. I am just about to round 8 FolFox. It was a hiney kicker this last round. I know I have a few more rounds of Chemo and am over the hump.

    My recomendation, is to ask for all of the side effects. The headaches, nausea, diarrhea, tingling due to tempature, etc.... All of the side effects can be reduced with care and good attitude! Stay as happy as you can. When I get down I walk the dogs or visit a friend. That helps me a lot. I have a helpful and understanding wife and that is the other side of the coin. Sometimes she is more upset about the Chemo then I am.

    Best Always, mike
  • beachinmom
    beachinmom Member Posts: 73
    thxmiker said:

    increase your chances
    It goes to the debate are there Elephants hiding in a strawberry field. Do they hide that good? or Are they never there?

    I went with Chemo to increase my chances that if there is a really small tumor that got missed, then the Chemo will kick its hiney!

    I am on my second round of Cancer. I have Signet Ring Cell cancer. I want it out of me or the chances lowered for reoccurrence. Chemo sucks, but the alternative is worse. I am just about to round 8 FolFox. It was a hiney kicker this last round. I know I have a few more rounds of Chemo and am over the hump.

    My recomendation, is to ask for all of the side effects. The headaches, nausea, diarrhea, tingling due to tempature, etc.... All of the side effects can be reduced with care and good attitude! Stay as happy as you can. When I get down I walk the dogs or visit a friend. That helps me a lot. I have a helpful and understanding wife and that is the other side of the coin. Sometimes she is more upset about the Chemo then I am.

    Best Always, mike

    Stick with It!
    Tom...

    I read what you posted closely. I usually don't come to this board, but did tonight as i am up not being able to sleep. Anyway. I was in your shoes, so I had to respond.

    A few things...

    ---You had rectal cancer which has a much higher reoccurrence rate.
    ---You had far fewer (5) than the recommended number of lymph nodes removed.
    ---Do you know if there was lymphatic invasion, or the grade of your tumor?
    ---Have you been tested for lynch, or was your tumor msi high?

    This has to be your choice. But, for me, i went into chemo knowing i could stop if it got too bad, but i new i would do all it took because i didn't want any regrets.

    So, I was stage 1, poorly diff tumor, lympho invasion. Surgeon suggested chemo, 1 onc did, 1 onc didn't...i chose to do FOLFOX, and completed 12. Tomorrow i will have another ct to see if continue being NED.

    If i were you, i would find out from your onc the answers to the questions i gave you at the top, then discuss with them. Good luck in your decision.