My decision

lisa42
lisa42 Member Posts: 3,625
No more chemo for me! I say that confidently, but I also feel a bit of fear in saying it out loud, too. But I've decided, when I'm fully recovered from this pneumonia and my oncologist says it's safe to start up chemo again, I'm not going to.
I've already "used up"/shown disease progression al all the usual FDA approved chemos for colorectal cancer except for oxaliplatin. I never had tumor growth while on oxaliplatin- in fact, my tumors responded pretty well to it with shrinkage. They grew back later, though. My problem with oxaliplatin is not only the dreaded awful side effects from it, but the fact that I'm allergic to it. I spoke with my oncologist and he was quite hesitant for me to try it again, but said we could do the allergy desensitization with the steroids, benadryl beforehand and infusing it slowly over 6 hours to see if I could tolerate it or not. If not, I could have a serious allergic reaction & then we'd immediately stop it. If I did tolerate it, we'd continue on.

The more I thought about it and remembered what I felt like physically and mentally when I was on oxaliplatin the first time and discussed it with my husband, however, I don't want to experience that ever again. Last time (maybe from the steroids and benadryl too), I was so foggy and out of it mentally that I couldn't even hardly function. I couldn't get a sentence out straight, people would call me on the phone & I'd have no idea who I was talking to- it was bad. My onc isn't thinking of this as a cure anyhow- just perhaps buying some more time, if it works. I don't want what time I have to be spent with neuropathy, pain, muscle spasms, and a mentally unsound mind, especially when it's not going to cure me anyhow. I decided not to take 5FU, Xeloda, or anything else either. Also, another main thing is that I've had so much chemo (4 years' worth) and it's really been quite remarkable at how well I've done, how my blood/platelet count has remained so good, I haven't been getting sick or other infections, etc. UNTIL this past month- contracted bacterial pneumonia. After several days of testing in the hospital and being on the "usual" pneumonia antibiotics for a few days, I kept spiking fevers of 102 each day & it wasn't stopping even on the antibiotics. They did more tests & discovered a bacteria in my lungs that had not been addressed yet with the antiobiotics I was on. The bacteria they found in me is known to cause pneumonia, but is quite rare. When I asked my oncologist how I could have picked up this rare bacteria, he replied that my immune system is compromised. When I replied back that how could that be since my blood counts had been in the normal range, including my white blood cells? His response was that even though I had enough white blood cells, they no longer functioned very well because of damage from the chemo. WOW. I guess I had heard that, but hearing it from him really made me think and realize that the chemo is destroying my immune system. WHY would I consider putting more poison in my body that is going to kill off the immune system even more?!

Not knowing if it will truly help me or not, I have still decided that I am going to be serious and follow through this time with the supplements I know are helpful (going to the naturopathic dr. soon to go over everything), and I am going to attempt to go vegan. I know that there are many people who have done so and have still died from cancer. I also personally know of a couple of people who cured their cancer by doing so. There is a woman in my cancer support group who had ovarian cancer. She had been through the surgery, radiation, and several different chemos. She finally got to the point where she was told there was nothing else they could do for her, that they'd keep her comfortable as much as they could. Well, realizing she was given a death sentence, she decided what did she have to lose by making some radical changes! She went vegan, started doing some major organic juicing, worked on making her body alkaline, completely avoided sweets, and... 11 months later she was completely cancer free. That was 11 years ago & she remains cancer free today (she's still vegan, juices, exercises, etc).
I don't know what it will do for me, or if I can even have the willpower to stick to it, but I'm going to try and I'm going to lean on my faith in the Lord big time (I have been this whole time, but now more than ever!).

I don't know what will happen to me, but I know that if I don't make it, I don't want my time to be spent in pain and with a foggy head.

So, that's that. I admit I'm scared, but I'm comfortable with this decision & so is my husband.

Lisa

So...
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Comments

  • neons356
    neons356 Member Posts: 57
    Lisa, it sounds as if you've
    Lisa, it sounds as if you've thought this out carefully, and I agree with your decision and admire you for it. It doesn't sound like you've given up, but just think that quality of life is a very important component of your decision. Do you have the support of your family, especially your husband? Perhaps your new lifestyle will accomplish what all the drugs and treatments have failed to do. I certainly pray that it does.
    Carl
  • keystone
    keystone Member Posts: 134
    Bless your heart Lisa. You
    Bless your heart Lisa. You have been such sn inspiration to so many on here. Even myself as just the caregiver you have given me such useful information and support.

    I know you are being led by God in this decision so I know its the right one. I will pray that the changes in your diet will give you many precious days with your loved ones. May pure peace be with you and your family! Stephanie
  • yoga
    yoga Member Posts: 87
    I admire you
    Hello Lisa,

    Well, you are certainly a strong woman with a great deal of faith and determination. I admire you for all that you have been through and for your decision as to how to proceed. It must have taken you a lot of thought and soul-searching to come to your decision and now it is time to move forward.

    I have done 'only' 15 months of chemo and am just going to start oxy with avastin. I am not ready to give up on chemo at the moment, but I can certainly understand how you have reached this point. There is so much good to be said for treating cancer naturally and with alternative medicines.

    When I was told last week that my chemo was no longer working and I had growth in my tumours I was numb with shock. My doctor told me he thought I would do well on the new chemo because I approach treatment in a positive way; exercise, eat well and am doing some alternative treatments. He told me how important my mental health was going to be and that I had to make sure I kept myself feeling positive if I was going to have a chance at doing well. I tell you all of this because, to me, it shows that the medical profession is recognizing that it isn't all about the chemo drugs . . . . that many other things can take a part in how one does.

    So, I send you hugs and will pray for you as you enter this new phase of your treatment.

    I admire you,
    yoga jo . . . Joanne
  • wolfen
    wolfen Member Posts: 1,324
    keystone said:

    Bless your heart Lisa. You
    Bless your heart Lisa. You have been such sn inspiration to so many on here. Even myself as just the caregiver you have given me such useful information and support.

    I know you are being led by God in this decision so I know its the right one. I will pray that the changes in your diet will give you many precious days with your loved ones. May pure peace be with you and your family! Stephanie

    Lisa
    You must do what is right for you. I wish only the best for you and hope this new approach will be the winning one. As you say, this just might be what it takes to make you better.

    Take Care,

    Wolfen
  • LAF53
    LAF53 Member Posts: 60
    yoga said:

    I admire you
    Hello Lisa,

    Well, you are certainly a strong woman with a great deal of faith and determination. I admire you for all that you have been through and for your decision as to how to proceed. It must have taken you a lot of thought and soul-searching to come to your decision and now it is time to move forward.

    I have done 'only' 15 months of chemo and am just going to start oxy with avastin. I am not ready to give up on chemo at the moment, but I can certainly understand how you have reached this point. There is so much good to be said for treating cancer naturally and with alternative medicines.

    When I was told last week that my chemo was no longer working and I had growth in my tumours I was numb with shock. My doctor told me he thought I would do well on the new chemo because I approach treatment in a positive way; exercise, eat well and am doing some alternative treatments. He told me how important my mental health was going to be and that I had to make sure I kept myself feeling positive if I was going to have a chance at doing well. I tell you all of this because, to me, it shows that the medical profession is recognizing that it isn't all about the chemo drugs . . . . that many other things can take a part in how one does.

    So, I send you hugs and will pray for you as you enter this new phase of your treatment.

    I admire you,
    yoga jo . . . Joanne

    Lisa
    You are an inspiration. God Bless

    Lydia
  • tommycat
    tommycat Member Posts: 790
    This decision makes me feel
    This decision makes me feel funny inside....I can understand why you're come to the conclusion you have to best help yourself, but still....
    I have grown fond of you.
    Your decision was not made lightly.
    Or easily.
    I am thinking of you Lisa....
  • Buckwirth
    Buckwirth Member Posts: 1,258
    Lisa,
    I sincerely wish you the best in your decision. If you ever need anything I am an hour or so down the road, please feel free to ask.

    Blake
  • pepebcn
    pepebcn Member Posts: 6,331
    Buckwirth said:

    Lisa,
    I sincerely wish you the best in your decision. If you ever need anything I am an hour or so down the road, please feel free to ask.

    Blake

    Hope the best in your decision , I will be praying for that!
    Hugs my dear friend!
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Dear Lisa,you are a very
    Dear Lisa,you are a very intelligent lady.I am pretty sure that you made this decision by cautious thinking.Life quality is always an important issue for everybody.I wish you the best for your decision and you are in my prayers as always.Take care.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Very, Very Insightful.....
    Lisa

    I completely support your decision to discontinue chemo. The cumulative effects over time simply grind our gears till we can't spin anymore. I've always tried to see chemo "As a Treatment - and Not a Lifestyle."

    Meaning, if we can get on and off the chemo, the treatment can be effective, but prolonged use tells it at some point, it will fail us. And when it does, you're right it makes absolutely no sense to put one's self through that, when we know how badly it makes us feel and what it does to our heads, as you say.

    Life is about more than keeping the heart beating, though some would argue, but life means different things to different people. Life is interaction through our 5-Senses and when we're too sick to make use of that, it's a problem.

    I spent this past year coming off my 3rd recurrence and I did okay with the surgery per say. But the radiation tx took me to the ground again and with another 6-more months of chemo, which brought my total to over 51x, I knew on my last infusion, that I had to stop and rest, or I would not have been able to do much more.

    And the 6-months of Folfiri was a living death for me anyway and I had absolutely ZERO quality of life and was housebound and bedridden and sick out out of my mind 25 out of 30 days of the month. It was during that time when I wrote the "Chemo Wars" post and where I was at in my journey with that.

    I rewrote that post for the book I am writing - but when I was writing that to post to the board, I thought I had done a pretty good job with it. As I re-read it to re-write it, I could tell the effects that "chemo brain" had on my writing. It was still ok, but I could see where I was frustrated in trying to say things the way that I wanted to say them.

    It took me about 3-4 hours to write that post and I was so sick that day from Folfiri and that had gotten me up out of bed to write it, because I hurt so bad I just had to talk about it.

    The only reason I fought so hard last year was I thought that I was still in good position to knock it back down and there was still the possibility of hope that we might get rid of it were good. Had I been told that it was "maintenance chemo" or "chemo for life" with no chance at really anything - I would have hung it up right there.

    Because, it had already taken everything away from me, except for stopping my heart.

    Should I see the 4th recurrence befall me, I'm not sure which way I would go. But, I know that I cannot live on chemo when I'm on it - my body has just about had enough. It's a decision that I might still have to face.

    So, reading your story today has confirmed the things I've been thinking about for quite some time. And I'm hopeful that if my time comes to trying another way, that I have the same grace and dignity that you possess when making that decision.

    I've always admired you and everything that you've done. And I remain hopeful that this new lifestyle change will yield the results we are all hoping for. And getting those chemicals out of your body will make you feel so much better.

    I respect your decision completely and the courage that it took to tell us about it. I know you have put alot of thought into your decision and as a community the best that we can do is support you!

    I'm standing at attention giving you a big salute to one of our greatest warriors!

    -Craig
  • angelsbaby
    angelsbaby Member Posts: 1,165
    Sundanceh said:

    Very, Very Insightful.....
    Lisa

    I completely support your decision to discontinue chemo. The cumulative effects over time simply grind our gears till we can't spin anymore. I've always tried to see chemo "As a Treatment - and Not a Lifestyle."

    Meaning, if we can get on and off the chemo, the treatment can be effective, but prolonged use tells it at some point, it will fail us. And when it does, you're right it makes absolutely no sense to put one's self through that, when we know how badly it makes us feel and what it does to our heads, as you say.

    Life is about more than keeping the heart beating, though some would argue, but life means different things to different people. Life is interaction through our 5-Senses and when we're too sick to make use of that, it's a problem.

    I spent this past year coming off my 3rd recurrence and I did okay with the surgery per say. But the radiation tx took me to the ground again and with another 6-more months of chemo, which brought my total to over 51x, I knew on my last infusion, that I had to stop and rest, or I would not have been able to do much more.

    And the 6-months of Folfiri was a living death for me anyway and I had absolutely ZERO quality of life and was housebound and bedridden and sick out out of my mind 25 out of 30 days of the month. It was during that time when I wrote the "Chemo Wars" post and where I was at in my journey with that.

    I rewrote that post for the book I am writing - but when I was writing that to post to the board, I thought I had done a pretty good job with it. As I re-read it to re-write it, I could tell the effects that "chemo brain" had on my writing. It was still ok, but I could see where I was frustrated in trying to say things the way that I wanted to say them.

    It took me about 3-4 hours to write that post and I was so sick that day from Folfiri and that had gotten me up out of bed to write it, because I hurt so bad I just had to talk about it.

    The only reason I fought so hard last year was I thought that I was still in good position to knock it back down and there was still the possibility of hope that we might get rid of it were good. Had I been told that it was "maintenance chemo" or "chemo for life" with no chance at really anything - I would have hung it up right there.

    Because, it had already taken everything away from me, except for stopping my heart.

    Should I see the 4th recurrence befall me, I'm not sure which way I would go. But, I know that I cannot live on chemo when I'm on it - my body has just about had enough. It's a decision that I might still have to face.

    So, reading your story today has confirmed the things I've been thinking about for quite some time. And I'm hopeful that if my time comes to trying another way, that I have the same grace and dignity that you possess when making that decision.

    I've always admired you and everything that you've done. And I remain hopeful that this new lifestyle change will yield the results we are all hoping for. And getting those chemicals out of your body will make you feel so much better.

    I respect your decision completely and the courage that it took to tell us about it. I know you have put alot of thought into your decision and as a community the best that we can do is support you!

    I'm standing at attention giving you a big salute to one of our greatest warriors!

    -Craig

    lisa
    awwwwww i am sorry

    michelle
  • standbyme
    standbyme Member Posts: 41
    Lisa
    You were so supportive and accomodating when you sent my husband the info on gemzar. He wasn't able to take it so he too is finished with chemo. He has not had any treatment for the last two months. The change in him is startling. He feels "normal". He feels good! It was hard to make that decision but we are at peace with it.
    We send you our strongest wishes for health and peace.

    Judy
  • buckeye2
    buckeye2 Member Posts: 428
    Praying for only good times
    Praying for only good times in body and spirit in the days ahead. You are a remarkable woman. Lisa
  • PhillieG
    PhillieG Member Posts: 4,866
    Lisa
    I know a decision like your's was not made quickly or easily at all. I think that many of us may at some point find ourselves in a similar position. I hope that I can make such a well thought out decision as you've made.

    While trying to answer a fellow member's question the other day, I looked back at a blog that I started in June of 2005 and wrote on a regular basis until December 2007 to try to find details of treatments and side effects. While I'm glad I viewed this again, I was also mortified by what I had endured. Much of the shock came from my details of surgeries and the recovery but also a lot from chemo. Definitely the combo sucked. By my fifth surgery I swore that I'd have to think very hard if I were ever to do a big surgery again. I've been fortunate to just do RFAs and more of a chemo lite for the past 4+ years.
    I think the reason why I bring this up now is because I've, at times, removed myself from the whole Heavy Chemo and the Operations. I don't believe I've ever taken the attitude that it's easy and just do it. I know it's very hard on the body and mind to endure all of that for a long period of time. But I've kind of forgotten just how taxing it can be.

    I am fully aware that at some point the chemo and RFAs may stop working for me. If/when I get to that place I hope I have the wherewithal to examine everything and make a thoughtful decision like I believe you have.

    I've always been very fond of you Lisa and have gotten a lot of inspiration from you. You will continue to be a source of inspiration to me and many others on this site.
    Please keep posting when you can, I support you 1000%.
    {{{hugs}}}
    -phil
  • z
    z Member Posts: 1,411 Member
    buckeye2 said:

    Praying for only good times
    Praying for only good times in body and spirit in the days ahead. You are a remarkable woman. Lisa

    Lisa
    Lisa it looks like you've really thought this out. I understand and I hope that you will use food as your new medicine to heal you. The woman you mentioned isn't the first person I have read about that used nutrition to cure themselves. I pray for only the best for you and your family. Lori
  • maglets
    maglets Member Posts: 2,576
    PhillieG said:

    Lisa
    I know a decision like your's was not made quickly or easily at all. I think that many of us may at some point find ourselves in a similar position. I hope that I can make such a well thought out decision as you've made.

    While trying to answer a fellow member's question the other day, I looked back at a blog that I started in June of 2005 and wrote on a regular basis until December 2007 to try to find details of treatments and side effects. While I'm glad I viewed this again, I was also mortified by what I had endured. Much of the shock came from my details of surgeries and the recovery but also a lot from chemo. Definitely the combo sucked. By my fifth surgery I swore that I'd have to think very hard if I were ever to do a big surgery again. I've been fortunate to just do RFAs and more of a chemo lite for the past 4+ years.
    I think the reason why I bring this up now is because I've, at times, removed myself from the whole Heavy Chemo and the Operations. I don't believe I've ever taken the attitude that it's easy and just do it. I know it's very hard on the body and mind to endure all of that for a long period of time. But I've kind of forgotten just how taxing it can be.

    I am fully aware that at some point the chemo and RFAs may stop working for me. If/when I get to that place I hope I have the wherewithal to examine everything and make a thoughtful decision like I believe you have.

    I've always been very fond of you Lisa and have gotten a lot of inspiration from you. You will continue to be a source of inspiration to me and many others on this site.
    Please keep posting when you can, I support you 1000%.
    {{{hugs}}}
    -phil

    gosh
    gosh Philly....kinda hard to follow that lovely post.....

    Lisa, like Phil, I have watched with awe as you have moved through this amazing maze of cancer treatment. You have always been ready to try something new and I too have learned a lot from you.

    I respect your decision completely. Having watched you I know you would never take a decision like this one lightly.

    With great respect and affection

    maggie
  • eibod
    eibod Member Posts: 160
    I know this decision must
    I know this decision must have been difficult to make. I admire you and your husband
    for the courage to face what may come. I feel sure that the sweet spirit that you have
    will help you know what is best for you. Take care, Brenda
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Lisa
    Lisa,
    I love your strength, your faith and your ability to look at what is and make a decision. You are an amazing woman. I will stay faithful in prayer.

    With love and aloha,
    Kathleen
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Treatment
    As others have said, you can tell that this is a decision that you, your husband and family have talked about and decided on. I'm sure this is one of the hardest decisions you've ever had to make but can totally understand and support your decision. And yes, oxy can be so hard on the body and mind. God is a big part of your life and He is walking right beside you through this. Keep up your spirit and I'm hoping that you continue to feel better.

    Hugs! Kim
  • idlehunters
    idlehunters Member Posts: 1,787

    Lisa
    Lisa,
    I love your strength, your faith and your ability to look at what is and make a decision. You are an amazing woman. I will stay faithful in prayer.

    With love and aloha,
    Kathleen

    Hey Girl.....
    WoW.... all I know is that is the decision Scouty made too. I have asked her..... How do you make that final decision to say...thats it...no more...chemo will not kill me. She says you have to be at peace with your decision.and I feel you really are. I am so happy to hear you are going to do the vegan..juicing..exercise..etc program.... and really give it your all.... TCM too? Yes...it does not work for everyone..but it DOES work for some. My prayers will be that YOU are one it works for. You are a beautiful person Lisa and I love everything about you. To me..this is not the end of your journey...quite the opposite... this is a NEW beginning...just on a different and better road. Please keep us up to date on what you are trying. It interests me to the max...as I am sure I will be following in your footsteps and those before you. As always...you inspire me. Take care.

    Jennie