Still fighting, BUT...

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apache4
apache4 Member Posts: 272 Member
edited March 2014 in Colorectal Cancer #1
Hi all,
I wanted to share my decision to stop treatment at this time. I am Stage IV for two years and have been on chemo of some sort the entire time. Well, I had a two month break once. My current regimen is seriously effecting my quality of life. I feel good four days out of the month. With Folfox and Folfiri I, at least, had two weeks a month. With so many liver mets, I am not a candidate for anything else, but chemo. So, with much thought, I have decided to go for quality of life and let the dice fall where they may. I am going to concentrate on improved diet and excercise. I had to give up my TaeKwonDo due to the extreme tiredness. My side effects are too many to list. Neuropathy has increased, my fingers and toes are peeling, the severe nose bleeds, just too much!
I still have hope to live for quite a while longer. I don't want this to be a downer for all of you in treatment, but I wanted to share. I have yet to inform my onc at Moffitt...maybe he would have another option, but I have always been honest with all the side effects and he just considers it normal, I guess.
I have been told since Day One of diagnosis that I would be on chemo for the rest of my life. I really feel like I am being poisoned now and that other parts of my body are suffering. I have had more then 30 treatments. Never have I had the luxury of being told that I have a certain # of treatments and that would be all.
I am at peace with my decision and will keep you all posted. My family and friends are also very supportive.
Linda

Comments

  • Madre
    Madre Member Posts: 123
    #2
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    I can totally sympathize
    I can totally sympathize with your decision. If you have your friends and family supporting you then enough said. You are lucky to have them. I would do the same thing - quality vs quantity. What good is treating if you miss out on so much with no guarentee of a finish date. I also think that by changing your diet and excercise you might have just as much of a chance to beat it after all. Keep strong and good luck to you.
  • Limey
    Limey Member Posts: 446 Member
    #3
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    Hi Linda, what a honest and brave decision you have made. I can certainly understand choosing quality over quantity. I stopped all chemo treatments in March because the negatives were far outweighing the positives. The chemo was having little effect but the side effects were increasing.

    It is tough because this decision is rarely one made just by ourselves. There are spouses, children and many other live things that come into play. I have had a great summer with my boys but currently the pain i am experiencing is getting much more difficult to manage and is pretty much 7 days per week. I remember with chemo at least I had a few good days of feeling good. I still can find a reason each day that makes it all worth it so life is still good.

    I wish you peace Linda in your decision and hope you do focus on diet and others things you can do yourself. Taking some control help with empowerment of this beast. shoot me an e-mail if you want to chat.
    Mark.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #4
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    Dear Linda,
    Thank you for
    Dear Linda,

    Thank you for sharing your decision with us. I am deeply supportive of and respectful of your decision. I also appreciate you sharing with us all a topic which doesn't often get aired on this board. It is an issue which many of us may or will face at some point. Sending all best wishes to you and your family. Quality of life is the most important thing.

    Tara
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #5
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    Dear Linda,
    Dear Linda,

    I know you have put lots of thought into what is a very difficult decision. I am so glad you shared your conclusion with us.

    You are a brave woman and I pray for joyful, rich days for you free from treatment.


    Love to you,

    Jennifer
  • cjf2006
    cjf2006 Member Posts: 83
    #6
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    your decision
    I understand your decision completely. I'll keep you in my prayers.

    I've been six weeks without treatment only because my doctors ordered it that way. In essence they have given up on irinotecan and are waiting the KRAS results regarding Erbitux. Since I have an aggressive cancer, I am suspecting I am not a candidate for it. So, it appears that the treat-or-don't-treat question will be answered for me.
  • kmygil
    kmygil Member Posts: 876 Member
    #7
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    Dear Linda,
    I understand
    Dear Linda,

    I understand your decision and I am praying that your life will be full and rich. Good diet and exercise should increase the quality of your life along with the absence of toxicity. You are a strong and admirable woman.

    Hugs
    Kirsten
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #8
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    kmygil said:

    Dear Linda,
    I understand
    Dear Linda,

    I understand your decision and I am praying that your life will be full and rich. Good diet and exercise should increase the quality of your life along with the absence of toxicity. You are a strong and admirable woman.

    Hugs
    Kirsten

    Dear Linda
    you are so brave, my husband may soon have to make that same decision. I hope he can find the strength that you have


    angelsbaby
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #9
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    kmygil said:

    Dear Linda,
    I understand
    Dear Linda,

    I understand your decision and I am praying that your life will be full and rich. Good diet and exercise should increase the quality of your life along with the absence of toxicity. You are a strong and admirable woman.

    Hugs
    Kirsten

    Dear Linda
    you are so brave, my husband may soon have to make that same decision. I hope he can find the strength that you have


    angelsbaby
  • betina61
    betina61 Member Posts: 642 Member
    #10
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    Dear Linda,I am suportive of
    Dear Linda,I am suportive of your desicion too,quality of life should always be more important,and rememIber that God is besides you on this journey.Lots of hugs to you
  • kristasplace
    kristasplace Member Posts: 957 Member
    #11
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    Courage
    I'm so sorry that you even have to make that kind of a decision, Linda. That must be very hard. But like the others, i understand. It's easy for me to say, "never give up," because i'm not faced with the prospect of forever doing chemo. Once i sit down and think about it, i i would NOT want to do this chemo for another month, let alone the rest of my life. In essence, the only thing you're really giving up on is having a miserable existance on chemo.

    There are many alternative treatments that should be able to greatly extend your life without poisoning you.

    Thank you also for sharing your decision with us. I'm having a bone cancer scare right now, and your post has calmed me considerably.

    Many hugs,
    Krista
  • apache4
    apache4 Member Posts: 272 Member
    #12
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    Thank you
    Thank you all so much for your supportive comments. I am so pleased as I was actually afraid to post something that might seem negative to some. Your encouraging words brought tears to my eyes.
    I know that I shouldn't complain much as I have not had multiple surgeries like some or hospitalizations. Also, the mets are confined to my liver...as far as I know right now.
    I am excited to take charge of this and feel better. Ordered the Quillin book and some others and going to a great health food store tomorrow. Already have a juicer and a blender.
    I had been very negative on this type of thing in the past and feel like somehow the Lord has spoken to me as I made my decision and told me that this was something to try.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #13
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    I admire your courage...
    Oh Linda, I totally understand and admire your decision. At the end of the day, the answer to how far we are willing to sacrifice our quality of life is entirely a personal decision. And only you know the answer to that question. I also am a true believer that chemo is not the only answer to people like us.

    The fact that you are looking at vitamin supplements and looking at other options tells me that you have far from given up, just taken the fight in a different direction. I have stepped up my vitamin intake of Vit C, D, Calcium, Flax Seed Oil, Iron and have included Curcumin, which is apparently being studied at MD Anderson as having cancer healing properties. I am also really working on trying to meditate and visualize, for two reasons. One, it can only make me feel better, and secondly, every case I have read about where there have been what you may call 'miraculous' cures, it can always be traced back to the 'mind-body' connection. Am I reaching? Perhaps. But we are definitely still fighting the good fight. My prayers and thoughts are with you. Monica
  • jams67
    jams67 Member Posts: 925 Member
    #14
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    courage
    Linda,
    I have always admired your courage and strength. You are the one I thought of when I drug myself kicking and screaming to the gym during chemo. I am so sorry that you are having such a tough time.
    I will pray for you to find a path that will be more tolerable than the chemo.
    Jo Ann
  • msccolon
    msccolon Member Posts: 1,917 Member
    #15
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    Your tough decision
    Linda, I am so glad you feel comfortable enough to come to this board to post your decision. We all have to make so many tough decisions, be it to continue the treatments that continue to make us miserable, or to stop them. We all understand the ultimate decision day may come where we have to decide that quality is just going to have to rule over quantity; I just hope that when my time to make that decision comes that i am able to make it with as much grace and peace as you obviously have. Mary
  • pamysue
    pamysue Member Posts: 105
    #16
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    God Bless you, Linda. There
    God Bless you, Linda. There are no easy decisions with this disease, but you do sound at peace and you are in control of your life. I admire you and I will be praying for you and your family.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #17
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    You're so brave
    Linda,

    You're so brave and strong. I hope you find ways to enjoy each minute of your life! Good luck in finding alternative sources of healing and please let us know how you're doing. It's so wonderful that you have the support of your family in this.

    *hugs*
    Gail
  • Kanort
    Kanort Member Posts: 1,272 Member
    #18
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    Support!
    Hi Linda,

    Thank you for sharing your decision with us about chemo. While stopping one type of healing method, I believe you are starting a different one. You will love Patrick Quillin's book and another you might like to read is by Dr. Weil, Spontaneous Healing. I loved them both.

    Linda, I pray that your quality of life will improve quickly and that you will be able to restart your TaeKwondo soon.

    Keeping you in my thoughts and prayers.

    Hugs,

    Kay
  • jcavanaugh
    jcavanaugh Member Posts: 100
    #19
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    Don't Give Up
    My dad recently went to an interventional radiologist at Georgetown. He has multiple mets to liver and lungs. The doctor said that he could treat him with sir spheres but his recent scan shows activity in his lymph nodes near his esophagus. So, if you only have cancer in your liver, this is an option for you. Also, there is a new drug being tested at MD Anderson (I do not know the name of it) but it is normally used to treat breast cancer. You might want to look into that. Hope this helps.
  • apache4
    apache4 Member Posts: 272 Member
    #20
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    Sir Spheres
    I have already checked this out. I just have too many liver mets. They are everywhere and anything like this would also destroy too much "good" liver also. Thanks. I will check out the M.D. Anderson thing.

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