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My decision

lisa42's picture
lisa42
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.

Lisa

So...

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Granny (you look too young in your picture to be called that :),

Let's be of support to each other and keep in contact through private messages. My onc appt is the 15th- I'd be interested in hearing what each other's oncs have to say about our decisions. I'll be in touch...

Lisa

grannyc's picture
grannyc
Posts: 63
Joined: Oct 2010

I am not sure how to private message...but I can learn.
Actually I have 4 grandchildren. 3 grown sons, being a grandma is the best.

GrannyC

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Please read about Traditional Chinese Medicine before spending
loads of cash on other modalities? TCM has fantastic merit and
results. It's been around for nearly four thousand years and has
served billions upon billions of humans well. It continues to be
used in most Asian hospitals, side by side with western medicine.

Anything that helps your immune system is better than doing
nothing. But there are many "alternatives" that cost a ton and
offer very, very little in return. TCM has long ago, proven it's
worth; there is nothing "new" about it. Cancer research centers
are already researching many of the herbs used, in an effort to
capitalize on the science involved.

Read as much as you can about TCM, and decide for yourself.

It works.

Best of health to all,

John

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hey sister! You know exactly how I feel about this!!! You can count on me to be your happiest cheerleader for going vegan/juicing/NO REFINED FOODS OR SUGARS OR ALCOHOL for healing and detoxing.

A health crisis is the perfect opportunity to give you momentum to go radical on your approach and purify down to the last nubbin. It doesn't have to be forever but I do hope you'll get the support you need from everyone to do exactly what your heart is telling you. Stand strong and you do not stand alone. And know that I will be standing in the gap for you. ;-)

Jeremiah 30:17.

GREEN = LIFE

You know I love you, girlfriend!

peace, emily

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

I have Always looked up to you and been inspired by your strength. You have always shown my kindness, regardless of how much you were going through. I am so impressed by your courage and am very happy that you've made a decision that you are comfortable with. I believe that you can do this without chemo. I truly believe that from the bottom of my heart. I am thinking of you often, Lisa.

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

HI Lisa, I haven't posted in quite a while. You will be in my prayers. I think you are an amazing woman and full of strength. You are inspiring Petrina

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

You are an amazing and strong woman. I admire you and wish the best for you. There is so much we can do to heal ourselves. And I am happy and hopeful for you that the changes you make will help you heal. And don't worry about willpower. The strength for that will come from your faith, the support from your husband and board friends, and your daily decision to follow that which is right for you.
In the Light,
Audrey

laurettas
Posts: 372
Joined: May 2011

I just saw this and thought of you:

http://www.marketwatch.com/story/celldex-therapeutics-announces-initiation-of-phase-1-clinical-trial-of-cdx-1127-2011-11-08

Didn't know if you had any interest in the immunotherapy treatment or not but wanted you to know about it just in case you did have interest.

Blessings to you!

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

found a bad word in your link.

Market Watch

And apparently the same one in mine. The word is market watch. Make it into one word and you get **** in the middle...

My only caveat is this is a phase 1 trial, so it is only trying to determine safe dosing and side effects, not drug efficacy.

laurettas
Posts: 372
Joined: May 2011

You are always coming behind me and cleaning up my links!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thanks for the link on this trial. My worry is that I've always been leery of any phase I trial. As Blake said, phase I trials are trying to find what dose is safe- so they up and up the dose until some patients in the trial start having problems and that's how they determine what an unsafe dosage is. I don't think I want to be part of that, but thanks for the lead anyhow. :)

Lisa

laurettas
Posts: 372
Joined: May 2011

I'm still pretty new at all of this so don't really know what all of these trials, etc. involve. That is why I just throw things out and leave others who are more knowledgeable to throw in the caveats! Or caviar! Both are fine.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

to your sturgeon.

laurettas
Posts: 372
Joined: May 2011

You have lots of caveats so guess that will have to do. Maybe someone else has some caviar to spare.

have2believe
Posts: 135
Joined: Dec 2010

Dear Lisa,
Thank you for your openness in sharing your experiences and knowledge. I believe the body is so complex and so is cancer, you've fought it with guns and now taking a different route, which I'm sure will be just as fierce. You just won't have the nasty side effects. I wish you great success and my sincere support.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

OOps, double post

John23's picture
John23
Posts: 2140
Joined: Jan 2007
christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

It is tough to read, but I completely understand. I know some people who having gone through chemo and surgery one round, and have said never again. Everyone has to decide at some point what they feel is right for them, only you can decide this. Your determination and strong will is an inspiration to me and will continue to be so for always. I hope one day colon cancer will have a better targeted therapy to fight it, I think this is just around the corner. Prayers for you as you venture into this new phase of your fight.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Market Watch is a website geared for investors, so anything we may
read there are what are called "forward looking statements". That means,
that what they are telling us may be some fairly large embellishments
of the actual facts. They are looking for investors, and try to provide
the best sounding wording they can, even if they leave out a few points!

It's like a resume' for a high paying job by an otherwise unqualified
job seeker. If you read it that way, you won't get hurt.

I had a ton of faith in a product known as "Trovax". I don't think
I'll be seeing that miracle drug anytime soon, either.

Best of health to you,

John

RickMurtagh's picture
RickMurtagh
Posts: 586
Joined: Feb 2010

Wow Lisa. I am not sure how I missed this post before. Reading it made my heart a little heavier, but knowing you are content with your desicion, makes my heart happy. I am so glad you are content with your decision. I really am. Now get to work building up that immune system!
Absolutely best wishes,
Rick

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