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My decision

lisa42's picture
Posts: 3661
Joined: Jul 2008

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.



Posts: 58
Joined: Dec 2010

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.

keystone's picture
Posts: 134
Joined: Dec 2010

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

wolfen's picture
Posts: 1330
Joined: Apr 2009

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,


Posts: 87
Joined: Feb 2011

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

LAF53's picture
Posts: 61
Joined: Sep 2011

You are an inspiration. God Bless


tommycat's picture
Posts: 790
Joined: Aug 2011

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's picture
Posts: 1271
Joined: Jun 2010

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.


pepebcn's picture
Posts: 6352
Joined: Aug 2010

Hugs my dear friend!

Fight for my love
Posts: 1530
Joined: Jun 2009

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's picture
Posts: 4408
Joined: Jun 2009


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!


angelsbaby's picture
Posts: 1171
Joined: May 2008

awwwwww i am sorry


standbyme's picture
Posts: 41
Joined: Sep 2008

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.


Posts: 428
Joined: Jul 2011

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

z's picture
Posts: 1414
Joined: May 2009

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

PhillieG's picture
Posts: 4912
Joined: May 2005

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%.

maglets's picture
Posts: 2596
Joined: Jun 2006

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


Posts: 160
Joined: Mar 2011

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's picture
Posts: 2361
Joined: Jan 2009

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,

idlehunters's picture
Posts: 1792
Joined: Apr 2009

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.


Annabelle41415's picture
Posts: 6722
Joined: Feb 2009

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

Posts: 395
Joined: Jul 2010


I don't know what I can say that hasn't been said already. You are an such inspiration to us all and I know you have given this an enormous amount of thought. I completely understand and support you in this decision. I am sorry that you have to even make this kind of decision. I know your strong faith with guide you on the right path.

I am here for you if you need anything. Praying for only the best for you.


Posts: 372
Joined: May 2011

on this new path that you are undertaking. Please keep in touch here as we all desire to know how you are doing. Peace be to you.

Posts: 217
Joined: Apr 2010

I can only say thank goodness I am not the only one going this route. I think we have an age difference, but I just can't do it again....my folfox reaction was so bad my onc did want to put me on anything for the failed liver resection, because he was afraid of my physical reaction. Then after the failed resection, I actually signed on for folfori/avastan and called it off. He is trying for Sir spheres, cyberknife anything I'll do and I still can't do it. I go monthly for blood work and discussion, my husband is working on my diet and I take some supplements. My body is a neurological mess, everything tingles,, but I can eat, have good and bad days. Maybe I will change my mind and do chemo, but doubt it. I thought I might be the only one that said no more and accept the fact that I may or may not be making a mistake, but I feel horrible because of chemo, not cancer, second surgery didn't help. Cancer is at fault but chemo will give me more time, but I want to be a viable person even if it a shorter time...thank you for sharing your journey, it helps me to know I am not alone in my decision.......Bless you and may we both be around for quite awhile. And if we both change our minds, so what, that is what women do......Pat

herdizziness's picture
Posts: 3642
Joined: Apr 2010

My dear Lisa, at some point in time, we all have to make decisions, hard decisions, difficult ones, I remember they had recommended against chemo for me, told me that I should enjoy the rest of my time as healthy as possible. I choose the chemo anyway. I remember when making that decision, (since I hadn't had chemo before)as I thought about how it affected my niece, it wasn't easy to choose it. My step-niece (God bless her soul)after having chemo resulting in the most awful of seizures told her mother that her decision was no more chemo. My sister-in-law begged her to keep doing chemo, my niece told her, "Mama, you have no idea how horrible this is for me, I'm at peace with my decision, please let me stay at peace." My sister-in-law and the rest of the family respected that.
And since we are your on line family, we respect your decision as well, with heavy hearts my dear, with heavy hearts and tears flowing down our cheeks, but with respect and understanding.
I hope that your alternative regime helps you in so many ways. When a person comes to the decision that chemo is no longer a way to spend your life, what do you have to lose trying something different? Not a dang thing, so you go girl. Just make the alternative stays NON-STRESSFUL would you? If something gets too much for you, give it a break, then get back on it when you can enjoy it. (in other words, don't completely deny yourself a piece of chocolate cake, Okay?). And as Pat said, you could always change your mind later, option is always open, even if not taken.
Love to you Lisa,
Winter Marie

Lovekitties's picture
Posts: 3372
Joined: Jan 2010

As someone posted earlier in the thread, this is not an ending but a new beginning for you and you new plan.

You have not given up, but just chosen differnt weapons to fight this battle.

Praying for much success and peace at heart for you and yours.


Marie who loves kitties

karen40's picture
Posts: 211
Joined: Aug 2011

I understand your decision making and support you 100 percent.
I wish you great success on your new journey and pray that you feel comforted along the way.

Phoebesnow's picture
Posts: 601
Joined: Apr 2011

God bless you.

amyb15's picture
Posts: 109
Joined: Jun 2009

Hi Lisa:
I have not posted in a very long time, but still read the posts frequently. Brenda lived almost 2 years after her diagnosis. She did all of the chemo she could, and died. She talked about diet, juicing TCM a lot but never really got into it because all of the oncologists she talked to were against that. You have been going for 4 years and I think it is a great decision for you. It is in God's hands. Hopefully things will turn around for you at this time. I am saying an extra prayer for you tonight.
Much Love:

pf78248's picture
Posts: 209
Joined: Jul 2008


I know your decision was very difficult andi commend your faith, strength and courage. I'm praying the lifestyle changes will be just what you need. May God bless you on your journey.

Hugs and Healing,

tootsie1's picture
Posts: 5065
Joined: Feb 2008

Oh, Lisa.

I can't really begin to tell you how much I admire you. When I log on here and see your lovely face, it just makes me happy. I've thought many times that I wished we lived closer together, so I could know you in person, too, because I think you must be an awesome person.

I'm glad that you and your hubby are both on the same page with this, because that way you have good support in the days ahead. I just pray that the nutrition route will result in a great change in your situation.

Keep us posted on how you're doing. It's obvious from all the replies that I'm not the only one here who is extremely fond of you.


Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Lisa, stay strong! You know what you have to do, now do it! I wish I was closer so we could help each other with our diets and excercise. Trader Jies has great vegan side dishes in the freezer area. Throw it on a bit of rice or noodles and they are great. The vegan burgers are good too. Have a Popsicle instead of ice cream. Have the thin wafer cooked instead of a big cookie. Trader joes has a good one or two. Lettuce wraps. Stuffed peppers with rice and mushrooms. You can do it just fill your fridge and freezer.

Eat anything and everything that builds the immune system. Take aloe shots! It cleans you out and keeps you regular. And call if you need anything.
The lord is with you!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Lisa, stay strong! You know what you have to do, now do it! I wish I was closer so we could help each other with our diets and excercise. Trader Jies has great vegan side dishes in the freezer area. Throw it on a bit of rice or noodles and they are great. The vegan burgers are good too. Have a Popsicle instead of ice cream. Have the thin wafer cooked instead of a big cookie. Trader joes has a good one or two. Lettuce wraps. Stuffed peppers with rice and mushrooms. You can do it just fill your fridge and freezer.

Eat anything and everything that builds the immune system. Do aloe shots! It cleans you out and keeps you regular. And call if you need anything.
The lord is with you!

Big hug

Sonia32's picture
Posts: 1078
Joined: Mar 2009

Firstly I'm not fond of you...I love you lol!

Like everyone on here, you are an amazing person with so much strength and grace.

You have a lot of faith in yourself and in God for doing this, was thinking about it last night.

I support you 110% all the way and know you can do this!

We need to set up a skype date soon when your able too, miss you.

Posts: 370
Joined: Aug 2011

I don't know you but have seen what a support you are to others on this forum. It sounds like you are making the best decision for yourself and this new path could be what you leads you to a longer, better quality of life. I am sending you light, love, and prayers. Bless you.


plh4gail's picture
Posts: 1238
Joined: Oct 2010

Lisa...It was one year ago last month I joined this board, between chemo pump/radiation and resection. I was here so unsure and frightened and even though our cancers and treatments were different, you were and are always there for me as you are so many others. I will always give you back the same love and support. I love your inspiration for faith and hope and the fact you say shove it to cancer and move on to something else if what you're doing isn't working. .....I raise my glass of herbal tea to you this morning to a wonderful strong change in your health and future.

Love you buddy! Gail

Posts: 306
Joined: Jan 2010

You inspire with your focus on the future. Thanks for being you.


geotina's picture
Posts: 2123
Joined: Oct 2009

You are a shining example of grace, dignity, love and faith to all. I know you are a woman of deep faith so may our Lord continue to guide you.

Love - Tina

Posts: 453
Joined: Aug 2008

May your faith sustain you, comfort you and guide you each and every day. It is evident how much you are loved here....I wish you many days filled with joy and memories and feeling well.

:) Dawn

tanstaafl's picture
Posts: 1303
Joined: Oct 2010

Dear Lisa
You've found ways to improve and beat the odds before. Since cancer is a game of percentages, molecular targets and immune function, we all hope that you are feeling better, formulate that new diet with some super supplements, build back the immune responses, stall and shrink the little buggers.

Cathleen Mary
Posts: 827
Joined: May 2011

Dear Lisa,

I am more a reader of this blog than a contributor. Many times your words have gotten me through a difficult time or guided me in a decision. My heart is filled with gratitude for you. Know that once again I am in awe of your courage and wisdom. Be assured that I will mention your name to God often and wish you every blessing as you try a non medical route.
Hugs, Cathleen Mary

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

dear lisa,

I am doing my meditation for 30 minutes as soon as i finsih this post.


johnnybegood's picture
Posts: 1122
Joined: Oct 2008

dont know what to say that everybody hasnt already said except you are a tough lady and i truly believe God has been holding you under His wing all along.stay strong you have always been an inspiration to everyone...Godbless....johnnybegood

lisa42's picture
Posts: 3661
Joined: Jul 2008

It was awesome reading all of your comments- your caring kindness and love moves me to tears- you are all wonderful.
That's all I can say without tearing up again-

Hugs and love to you all...


Lori-S's picture
Posts: 1286
Joined: Sep 2010


KathiM's picture
Posts: 8077
Joined: Aug 2005

And what I say is "Please let Lisa be comfortable and in a good place enough to enjoy her day"....

I am a bit further than 'up the street', but you know I will be by your side in a heartbeat, dear friend!

Hugs, Kathi

pluckey's picture
Posts: 484
Joined: Jul 2009

Wow, I've not been a regular on the board this past year, but sneak in every now and then to catch up on everyone.

You are an incredible, generous spirit and have given so much thoughtful feedback, information, support and prayers to so many of us on this board.

So that is what we must do for YOU. This is your fight, Your body. Your Cancer. Your Way.
I imagine it must be tough to even explain it to people in real life, to people who have not walked the road we have. I recall family and friends urging me to fight, keep fighting, do whatever it taks to survive....they have no idea, do they?

Hugs to you sweet Lisa


Posts: 1961
Joined: Aug 2003

Lisa -- I totally support your decision, which has obviously been so thoughtfully considered....I am sending prayers and all good wishes your way --- You have been such a source of inspiration and support to me, and will continue to be so....


Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

I will keep praying for you Lisa. That had to be a tough decision for you and your family.


Vickilg's picture
Posts: 281
Joined: Jan 2011

Hi, Lisa... I wish I was there to give you a big hug.

grannyc's picture
Posts: 63
Joined: Oct 2010

I have been struggleing with the same issues. I am at the point that nothing is going to heal me and the oxy is out of the question because I too had a horrible allergic reaction to it on the first treatment.
I have fought this battle for over 4 years and am on my third recurrance and it is now in my liver, inoperable. I have good days and bad days and the chemo is taking it toll.

Like you I have been in prayer and seeking the peace that the Lord gives when you know oyu are making the correct diecission for YOU. My husband supports me and that is so wonderful but others in my family and friends tell me I am giving up and that I am getting weak and not listening to the doctors blah blah blah.

I have my next appt with the onc on wednesday 11/16 and if my CEA is still up he wants to add more chemos drugs but i too have decided to stop.

I support you and know that the Lord is in control and all we can do is try our best to obey.

Granny C


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