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ninetoes
ninetoes Member Posts: 81
edited March 2014 in Colorectal Cancer #1
After surgery, I was told I had a 25% chance my cancer would come back if I did nothing. If I did chemo I would reduce that by 5%, does anyone think it's worth it? I have gone through 1 treatment already and it's hitting me hard, not sure this is worth it for 5%.

Dave

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  • Buzzard
    Buzzard Member Posts: 3,043 Member
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    percentages......
    The Onc told me that it would give me an extra 5% of non reoccurence.....My cancer surgeon at Vanderbilt told me that they lowball those numbers and he says actually its closer to 15-20% increase in odds of it not returning so I went from a 70% to an 85%..Even at 5% I will take what I can get.....Don't even think about it, keep going with it, you never want to look back and say,"Man, I wish I would have done those other 11 treatments"....when you start thinking about that then do the treatments for the ones that love you...That always kept me in the ballgame....Good Luck and Hang in there.....
  • Shayenne
    Shayenne Member Posts: 2,342
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    Buzzard said:

    percentages......
    The Onc told me that it would give me an extra 5% of non reoccurence.....My cancer surgeon at Vanderbilt told me that they lowball those numbers and he says actually its closer to 15-20% increase in odds of it not returning so I went from a 70% to an 85%..Even at 5% I will take what I can get.....Don't even think about it, keep going with it, you never want to look back and say,"Man, I wish I would have done those other 11 treatments"....when you start thinking about that then do the treatments for the ones that love you...That always kept me in the ballgame....Good Luck and Hang in there.....

    I know...
    ....Sometimes I get to thinking myself is feeling like crap all the time really worth it, and though I don't feel like crap all the time, it's just during chemo times, YES! it is worth it! I even asked a social worker in the hospital one day if it's really worth it to keep going for chemo, and she said it was! because you never know, percentages are bullcrap to me, and alot of others, you never know what the outcome is going to be, you may one day stop and say to yourself "I should have done this"...and instead, what if it's 10 years down the road, you will be saying instead to yourself..."I'm so glad I did this..." at least it's worth trying, screw percentages and numbers, just go with your heart, and do it for your family :)

    Hugssss!
    ~Donna
  • usakat
    usakat Member Posts: 610 Member
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    Only You Can Assess the Value of Chemo
    Hi Dave ~

    Ah, to do chemo or not to do chemo....that is a good question!

    Every single person on the planet has to make value choices throughout their lives...do I want a skateboard for Christmas or a new pair of Air Jordan sneaks? Do I want to go to college or get a job? Do I want the Chevy pickup or the Ford Mustang? Do I ask her to marry me or break up with her? Do I want to do chemo or try something else??? And on and on and on it goes...life.... Some questions are far easier to answer than others.

    Whether or not to do chemo MUST be a highly personal choice, because only you can truly assess the benefits and the costs to you personally. And while your choice will affect the other people who share your life, it's truly only you who will actually have to LIVE with your choice, however it turns out. This is one of those life and death decisions. Very tough indeed.

    If I recall, you are on 5FU and Oxaliplatin? And if I remember correctly, Buzzard's statistics are more accurate with the Oxaliplatin giving you a 5% boost on top of the 5FU + Leucovorin protocol if done alone. In fact, there have been reports very recently citing this very same thing, that survival rates have increased in the last five years for Stage III and IV colorectal cancer patients because of the newer treatment modalities that are now available, such as Oxaliplatin, Cetuximab, Avastin, and advancements in surgical procedures (improved colon, rectal and liver resection techniques, RFA, HAI pumps, etc.).

    As for me, I had Stage III inherited colon cancer (HNPCC) with a very agressive tumor, so I went for the 5FU/Lucovorin/Oxaliplatin combo (Xelox). It was not easy - I puked for days after each treatment, was nauseous most of the six months during treatment, landed myself back in the hospital after a tough round, and all sorts of other unfun things, but I finished it and I'm glad I did. I have been cancer free since January 2007.

    Other folks here, though, will tell you about the non-chemo routes they took and they have enjoyed success as well. I admire folks like Emily (2bhealed) and Lisa P (Scouty/elder Lisa) because they truly dedicated themselves to serious lifestyle changes with daily juicing, nutritional adjustments and health management practices. Both are glorious examples that traditional medicine is not the only choice out there.

    You do have several options to think about: a) Continue with the course you are on and tough it out, like I did, like many of us do; b) Adjust your chemo regime to make it more tolerable (such as reducing the Oxaliplatin dose or stop the Oxaliplatin altogether and do the 5FU + Leucovorin only); c) Discontinue chemo and try something else - there are lots of alternative treatments out there, however many are not endorsed by traditional medicine, but that does not mean they don't work; d) Stop the chemo, get on with life and hope for the best.

    Something you might try is make a few Pros and Cons lists. Sit down and write out your options and then decide what the pros and cons are of each choice. Writing it out in that way might show you on paper all the thoughts that are circling around in your brain and help you to move closer to an ultimate logical choice.

    Either way, whatever choice you do make, commit yourself to it fully and have no regrets for what may happen in the future. The choice you will make today will be the right choice for you right now. What may come, will come, and you can make the necessary choices for future events when they happen.

    Good luck and let us know how you fare as you continue on this journey.

    Many blessings to you for a clear mind, an unburdened heart, and restored health!

    Katie
  • serrana
    serrana Member Posts: 163 Member
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    Statistics: Not for
    Statistics: Not for individuals only for horse races.....If it is hard for you to tolerate the chemo that is one issue but listening to statistics that are outdated and many not even apply to you is a different issue altogether.
    Every statistic any doctor (in 3 years of treatment)told me was actually not correct in the long run. I personally don't even listen to them any more.
    I agree with every other comment posted to your post but want to add this........most statistics are based on data that are at least 5 years old and don't really reflect the newer protocols such as Avastin and Erbitux etc nor the 2008 new KRAS information.
    In addition statistics are for groups of folks who may or may not be like you at all, age, prior med history, etc. Remember there are many who have other medical issues, are not following a good integrative medicine adjunct protocol with their chemo, and many who give up for financial reasons/insurance inadequacy reasons.
    If you could get a group of folks just like you and see their survival it might be a totally different story.Read everything Bernie Segal, MD has written on attitudes affecting healing in the face of odds.
    I have had Zeloda, Folfox ( oxaliplatin), and Folfiri with Avastin in three seperate sequences over the past two years. Yep, it was hard at times but they tailored the 'cocktail" so the side effects were really minimal. I drove myself 200miles round trip for the infusions. The only real hard time was the 46 hour pump that I had to wear twice a month, it isn't much of a fashion statement. LOL. I am NED now.Who knows, maybe it was the chemo that did it, maybe not.
    Anyway the bottom line is if you want to stop chemo don't stop because of statistics.
    Serrana
  • dmdwins
    dmdwins Member Posts: 454 Member
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    serrana said:

    Statistics: Not for
    Statistics: Not for individuals only for horse races.....If it is hard for you to tolerate the chemo that is one issue but listening to statistics that are outdated and many not even apply to you is a different issue altogether.
    Every statistic any doctor (in 3 years of treatment)told me was actually not correct in the long run. I personally don't even listen to them any more.
    I agree with every other comment posted to your post but want to add this........most statistics are based on data that are at least 5 years old and don't really reflect the newer protocols such as Avastin and Erbitux etc nor the 2008 new KRAS information.
    In addition statistics are for groups of folks who may or may not be like you at all, age, prior med history, etc. Remember there are many who have other medical issues, are not following a good integrative medicine adjunct protocol with their chemo, and many who give up for financial reasons/insurance inadequacy reasons.
    If you could get a group of folks just like you and see their survival it might be a totally different story.Read everything Bernie Segal, MD has written on attitudes affecting healing in the face of odds.
    I have had Zeloda, Folfox ( oxaliplatin), and Folfiri with Avastin in three seperate sequences over the past two years. Yep, it was hard at times but they tailored the 'cocktail" so the side effects were really minimal. I drove myself 200miles round trip for the infusions. The only real hard time was the 46 hour pump that I had to wear twice a month, it isn't much of a fashion statement. LOL. I am NED now.Who knows, maybe it was the chemo that did it, maybe not.
    Anyway the bottom line is if you want to stop chemo don't stop because of statistics.
    Serrana

    On the mark
    USAKAT said it all. Such a personal decision- never the same for anyone. I chose to do chemo even though I was very concerned about the toxic effects on my body- because I know that I would have been one of the people that would say...what if I had done this or that. But I also supported my body with supplements and diet changes during chemo and continue to do so after chemo. I am currently NED but if it reoccurs I again must make that difficult decision.

    I wish peace of mind with the decision you make.

    Dawn
  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Dave
    I liked Serrana's comment "Statistics: Not for individuals only for horse races"
    There's probably a greater chance of slipping in the bathtub too. You have to do what you feel is right for you as others said. Personally, I'd hate to see it come back with me and then go "if only I did more chemo..."

    Chemo sucks, no doubt about it. I am over the 180 rounds of it mark. It still sucks but I'm still here and it's not as bad as it used to be. I have been in the place you seem to be in too. When it's bad, it's bad.

    Kat had a good idea, write it all down if that helps you.

    hang in there Dave
    -phil
    BTW I never asked ANY percentages about any of this. I did ask one Onc "Let me put it this way, would you lend me $10000?" to try to get an idea about my longevity. He replied "I wouldn't lend you $10000 even if you were healthy". That was good enough for me.
  • ninetoes
    ninetoes Member Posts: 81
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    PhillieG said:

    Dave
    I liked Serrana's comment "Statistics: Not for individuals only for horse races"
    There's probably a greater chance of slipping in the bathtub too. You have to do what you feel is right for you as others said. Personally, I'd hate to see it come back with me and then go "if only I did more chemo..."

    Chemo sucks, no doubt about it. I am over the 180 rounds of it mark. It still sucks but I'm still here and it's not as bad as it used to be. I have been in the place you seem to be in too. When it's bad, it's bad.

    Kat had a good idea, write it all down if that helps you.

    hang in there Dave
    -phil
    BTW I never asked ANY percentages about any of this. I did ask one Onc "Let me put it this way, would you lend me $10000?" to try to get an idea about my longevity. He replied "I wouldn't lend you $10000 even if you were healthy". That was good enough for me.

    Thanks everyone for the feed
    Thanks everyone for the feed back. I'm going to talk to my doc and see if she can change my meds.



    Dave
  • kmygil
    kmygil Member Posts: 876 Member
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    Insurance Chemo
    Hi Dave,

    I, too, was given the option of no chemo (85% that it would be ok) and chemo (90% that it would be ok.) Well, I sort of thought of it like this: 5% is not a lot when you're talking about a raise, but it's a lot when you're talking about your life. So I opted for the chemo & did 9 of 12 treatments. I called it after 9 with the full agreement of my oncologist, since the object of chemo is to cure, not kill LOL! But only you can decide if this is something you feel is worth it. You are the captain here, and only you can steer this boat. Give it some thought and see if your dosage can be reduced.

    Hugs,
    Kirsten
  • rustypipes12
    rustypipes12 Member Posts: 9
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    chemo
    Hi Dave, I was told by my Onc. that there was a 25-40% chance of reoccurance at my age without the chemo and a 15-20% chance with it. I don't know if my doc likes to cover himself with larger spreads or what! I started the first of my 12 last Thursday and tolerated it well. I'm on the 5fu,oxy,lucaveran (however it's spelled). My Pet scan came back clean except for some fat on my liver so the doc says I have to give up alcohol. No more beers watching football, now I can shave my head and become a monk. I'll say pretty much the same as everyone else.....it's a crap shoot! You might want to look into what the recommended drugs are and how they will be delivered, I think it makes a difference. I go in for two hours then come home with a "fanny pak" that pumps the chemo in for two days before a visiting nurse comes out and unhooks me. This was only my first time but it wasn't that bad (yet). I'm sure there are plenty of folks here that can answer the questions that will inevitably come up after you talk to the doc. In any case good luck and I hope whatever you decide it works out.
    Paul