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Need advise on Chemo!

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Comments

  • TMac52
    TMac52 Member Posts: 352

    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.

    Thanks Mike and Beachinmom
    I appreciate your input and will ask te right questions next Monday. Thank You.
    Tom
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Opinions, opinions, opinions :)
    Hey Tom,

    I don't think I can add much more to what anyone else has said... and far be it from me to tell anyone what they should/shouldn't be doing. As much as we all get a lot of support from our fellow CSN'ers, knowing that they totally understand the frustrations/fears/joys that we all go through because of this thing called "cancer", not to mention, a lot of knowledge because we all can pool our knowledge that we've learned through experience... the bottom line is, no one... doctor or fellow CSN'er can know what is the absolute best for everyone. Why? Because although these cancers show a common thread/pattern of how they work... they can also be as different as night and day, even though it's the same kind of cancer. I swear that is what is the enigma of cancer... just when you think you have it's pattern figured out, it changes. Just as soon as it works the exact same way for 10 people, it changes for the 11th person and is totally different again for the 15th person. So what worked for Person #5 does absolutely nothing for Person #15.... and none of us know what our Number is or where we fall in the pattern.

    It's actually quite an eye opener when the "specialist" doesn't really have any more of an idea than the person who made an educated guest here on the CSN forum. Now, don't get me wrong... doctors/oncologists/radiologists/specialists have all been trained and specialized in medicine, surgery, radiology and all things that modern medicine has to offer. But even with all that training and experience, they still can't tell you how you are going to react/respond, or what the chances are that a particular treatment is going to ultimately be successful or not.... no more than whether my opinion would be the successful decision for you (or me). If I insisted that you finish all 8 rounds, no matter what your side affects or potential long term affects were going to be... and it turns out that you never had another recurrence, then you would hail me as one very smart cookie and might even refer others to getting my opinion. Then again, if you followed that advice and a year later, were suffering from permanent nerve damage, lack of energy AND you ended up with a recurrence, I could end up being the idiot that, "Why did I ever listen to her?? What the heck was I thinking??" Sort of the luck of the draw, no?

    But I totally understand you just wanting some guidance and if possible, a definitive answer as to what the heck is the best thing for you... and whether your choice will be doing more harm or more good? I so totally get it!!

    Now, having said that, I would say, go with your gut... make a decision that you, and only you, are going to be totally comfortable with. If it ends up not being the perfect decision, then don't beat yourself up about it, and don't blame yourself that it may not have been the right choice (there's nothing saying that any choices will be the perfect choice). You'll just have to do what many, many of us do over and over again.... scream, have a little hissy fit, then brush ourselves off and attack again with a new plan.

    Talk to your onc... get the pros/cons of his/her recommendation for the 8 rounds. Why 8? What about taking the Oxy out and just going with the 5FU (the oxy is probably what is making these treatments so tough for you)? Will 4 rounds be as effective as 8? As 6? As 5? IF a recurrence were to occur, then what would the next plan of action be? Just arm yourself with as much info as possible. Then go to an alternative practitioner and find out what they suggest in the way of alternative treatments. Do research on your own regarding nutrition, lifestyle changes, etc. Chances are you are going to toss some of them out as things you really don't think will work for you... then again, you may say, hey, "Why not?" or "Why not incorporate both?"

    No one said this journey was going to be easy... or that there was any one right answer for everyone. You will hear people here get very excited about what they are doing for themselves... and want to convert everyone to it. But unfortunately, what works for one does not necessarily work for another... hence you have to find your own perfect fit.

    Just know that, as you try and work this out... we are all here behind you, even if we don't have "Tom Answers" :)

    Cheryl
  • TMac52
    TMac52 Member Posts: 352

    Opinions, opinions, opinions :)
    Hey Tom,

    I don't think I can add much more to what anyone else has said... and far be it from me to tell anyone what they should/shouldn't be doing. As much as we all get a lot of support from our fellow CSN'ers, knowing that they totally understand the frustrations/fears/joys that we all go through because of this thing called "cancer", not to mention, a lot of knowledge because we all can pool our knowledge that we've learned through experience... the bottom line is, no one... doctor or fellow CSN'er can know what is the absolute best for everyone. Why? Because although these cancers show a common thread/pattern of how they work... they can also be as different as night and day, even though it's the same kind of cancer. I swear that is what is the enigma of cancer... just when you think you have it's pattern figured out, it changes. Just as soon as it works the exact same way for 10 people, it changes for the 11th person and is totally different again for the 15th person. So what worked for Person #5 does absolutely nothing for Person #15.... and none of us know what our Number is or where we fall in the pattern.

    It's actually quite an eye opener when the "specialist" doesn't really have any more of an idea than the person who made an educated guest here on the CSN forum. Now, don't get me wrong... doctors/oncologists/radiologists/specialists have all been trained and specialized in medicine, surgery, radiology and all things that modern medicine has to offer. But even with all that training and experience, they still can't tell you how you are going to react/respond, or what the chances are that a particular treatment is going to ultimately be successful or not.... no more than whether my opinion would be the successful decision for you (or me). If I insisted that you finish all 8 rounds, no matter what your side affects or potential long term affects were going to be... and it turns out that you never had another recurrence, then you would hail me as one very smart cookie and might even refer others to getting my opinion. Then again, if you followed that advice and a year later, were suffering from permanent nerve damage, lack of energy AND you ended up with a recurrence, I could end up being the idiot that, "Why did I ever listen to her?? What the heck was I thinking??" Sort of the luck of the draw, no?

    But I totally understand you just wanting some guidance and if possible, a definitive answer as to what the heck is the best thing for you... and whether your choice will be doing more harm or more good? I so totally get it!!

    Now, having said that, I would say, go with your gut... make a decision that you, and only you, are going to be totally comfortable with. If it ends up not being the perfect decision, then don't beat yourself up about it, and don't blame yourself that it may not have been the right choice (there's nothing saying that any choices will be the perfect choice). You'll just have to do what many, many of us do over and over again.... scream, have a little hissy fit, then brush ourselves off and attack again with a new plan.

    Talk to your onc... get the pros/cons of his/her recommendation for the 8 rounds. Why 8? What about taking the Oxy out and just going with the 5FU (the oxy is probably what is making these treatments so tough for you)? Will 4 rounds be as effective as 8? As 6? As 5? IF a recurrence were to occur, then what would the next plan of action be? Just arm yourself with as much info as possible. Then go to an alternative practitioner and find out what they suggest in the way of alternative treatments. Do research on your own regarding nutrition, lifestyle changes, etc. Chances are you are going to toss some of them out as things you really don't think will work for you... then again, you may say, hey, "Why not?" or "Why not incorporate both?"

    No one said this journey was going to be easy... or that there was any one right answer for everyone. You will hear people here get very excited about what they are doing for themselves... and want to convert everyone to it. But unfortunately, what works for one does not necessarily work for another... hence you have to find your own perfect fit.

    Just know that, as you try and work this out... we are all here behind you, even if we don't have "Tom Answers" :)

    Cheryl

    Opinions
    Cheryl,
    Thanks so much for your 2 cents. Thats exactly why I posted the question I need help. What I have learned is that I am not going to get anyone who will tell me straight up do this or do that. But I am happy that there are people who care enough to respond to the question and offer their support. When I started visiting this site I was amazed at the personal relationships that develop through the struggles of diagnosis and treatment I am now starting to feel that myself and am very grateful for it. So that said I dont expect the answer from here but the support is overhelming as you well know. Thanks Cheryl
    Tom
  • John23
    John23 Member Posts: 2,122
    TMac52 said:

    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

    Tom -
    While diet and exercise is important, it isn't "the cure", by any means.

    Eating well and getting your immune system built up, is of primary
    importance, and "juicing" can be a great path to take to do that.
    Anything you can do to build that immune system up, is a major plus.

    The herbs I've used are known to have anti-cancer properties.
    Extensive tests on those herbs by some of the leading cancer
    research centers and pharmaceutical companies bear that out.

    Please note: The herbs can be used with present conventional treatments.

    Did the herbs get rid of my cancer? I have absolutely no way to
    prove that it has. If my cancer is gone or in remission, it can be
    attributed to "sheer luck" as well as anything else. It can't be
    attributed to "chemotherapy", since I did not use any, but if
    I had, I'm sure they would attribute it to chemo.

    I personally believe that the best way to survive, is not to
    allow your body to be beaten into a pulp. The battle your body
    fights should be against cancer, not against the ravages of
    what they try to tell you will "cure you".

    There are absolutely no guarantees with anything, Tom.

    Chemotherapy and radiation are only two methods out of thousands
    that have been used in an effort to beat cancer.

    I cringe every time I read advice telling a cancer victim that
    "you don't want to look back and wish you did something different".

    It's usually said in defense of using chemotherapy and radiation,
    not an alternative. There should never be a reason to "look back
    and wish", because there are no guarantees that whatever route you
    take will keep you alive.

    The most ironic part of it all?

    Once your body has become beaten down with chemical therapies
    and radiation's ravages, there is very little chance that something
    as safe as herbal formulas will be able to fix the intense damage.

    Doing an alternative has one big benefit.... If you try it and
    it doesn't work, your immune system remains at it's best, if not
    better than before, and the toxic remedies can still be used if desired;
    it's never too late for the "big guns".

    It should be understood, that having too much of any toxic treatments
    can destroy the possibility for success of using a less damaging remedy
    in the future; the damaging effects of the toxic remedies can render
    anything safer, useless.

    Personally, I would have more reason to "look back and wish", if I
    ended up in hospice after being sick from chemo and radiation for
    years. It's a sobering thought.

    It's not to say that I won't end up there anyway, regardless of
    TCM herbs, or juice, of course. But just the idea of being sick
    from treatments that could end up failing, isn't conducive to my
    desire to survive against all odds. If I feel there's a "better way",
    I'll take it. That should be everyone's criteria for survival; question
    everything, dot the I's and cross the T's.

    There are some very valid options, Tom. One only needs the courage
    to learn and understand those options. It takes no courage to
    believe in your own body's ability to survive; it takes trust.

    People really should rely more on their own instincts, rather than the
    hyperbole of the industry.

    I may die of cancer, but I will be healthy until that day.

    Best thoughts and wishes.

    John