CSN Login
Members Online: 9

Refusing Chemotherapy

Annie53
Posts: 3
Joined: Mar 2010

I have recently had a recurrence of colon cancer, Stage IV, metastasized to the lung. Four years ago I had 3 nodules removed from my right lung, and then underwent 6 months of folfox. It was hard but I did it, and went 4 years cancer free. In January a nodule was detected on my left lung. It was easily removed surgically on Feb. 22. My oncologist recommended 6 months of folfiri. My first treatment was March 22, 10 days ago and I still feel nauseous and tired and depressed. I have spoken to two thoracic surgeons who have indicated to me that since I am cancer free the chemo would not be necessary. The onco feels that it may get rid of any cancer cells that are still in my body. But the surgeons feel that with no evidence of disease there is no need to put my body thru this ordeal of chemo. I plan to tell my onco on Monday that I am not going to continue with chemo. My question is, has anyone out there refused chemo? I would love to hear of anyone else's experience. Thank you.

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Dear Annie,

I wouldn't say that I have refused chemotherapy, but in conversation with my partner and my oncologist, we all agreed that ending chemo would be the best decision for me. Following a metastasis to the sacrum, among other treatments I was having infusions of irinotecan that, like your treatments, made me terribly sick -- nauseated, tired, and depressed 8 and 10 days after each infusion and unable to get out of bed for much of that time. We tried reducing the dosage but the effects remained the same. Since my goal for treatments and in general is to provide for myself the best quality of life possible, none of us could see how such symptoms offered that even if the chemo slowed tumor growth.

I am convinced we made the right decision. Survival isn't the goal; living well is. Being desperately sick half the time wasn't a good way to live.

It sounds like there is a debate about whether chemo will eliminate the disease for you, though. That wasn't the case for me -- the expectation was that it might slow tumor growth. So you may have other considerations too.

John

Patteee's picture
Patteee
Posts: 949
Joined: Jul 2009

Oh John, when you just popped up like that, it brought a smile to my face. Can't believe it has been 2 years. Miss you - think about Adrian and hope he is well.

John23
Posts: 1832
Joined: Jan 2007

Annie, everyone's different, and every case of cancer is scary
to each one of us.

Some of here have chosen alternative routes for various reasons,
but each one of us has done so with an open mind, and with
considerable fear.

One of my oncologists staged me at 3c, while another one said
I was a 4. Both said I had to do chemo within 1 or 2 months of the
operation, or it probably wouldn't be effective. My wounds didn't
heal until almost 6 months later, and they felt at that time, that the
chemo may only be a 50/50 chance at best. They told me I had
cancer throughout my body, since it was in so many lymph nodes,
but that the chemo may or may not work.

After much research, I chose to take medicinal strength Chinese
herbs instead. I used the herbs to fight the cancer cells directly,
and to build up my immune system. That was over three years ago.

Others here went the Juicing route, building up their immune system
in that manner.

There are other options as viable, and some "late term" options as well.

You are the only one that should make the choice, and you should
do so with as much information as you can gather.

The cost of alternatives should not be expensive, if they are, steer clear.
Be suspicious of any product, alternative or mainstream, that makes
a claim to be a "cure" for cancer.

Although a Doctor of Traditional Chinese Medicine might charge
almost as much as a visit to a doctor of western medicine, the
visits do not continue forever, nor do the treatments. The overall
cost for that route should be considerably less than the "co-pays"
of the WM insurance coverage.

(I posted a list of herbs on a previous post, that are inexpensive,
but should only be used under supervision of a doctor of TCM)

The "Juicing route" is fairly simple, and the cost is minor.

Not doing chemo; denying something that nearly everyone here will
tell you to do, is not easy. Every post that tells you that chemo is
what is keeping them alive, will add to your fears that you are making
a tragic mistake doing otherwise.

Doing anything outside of the western medicine route takes an almost
overwhelming amount of courage; courage that we find ourselves
lacking under the stress of having this dreaded condition. Having
people around us, family and friends, telling us that we are being foolish,
adds a tremendous amount of stress to an already stressful situation.

And by going any other route, you will always wonder if you made
the right choice.

Keep in mind, that those that have left their choice in other's hands,
are worrying about their choice as well; there is no guarantee that
any route we take will keep us alive.

We can't always tell what will make us better, but we do know what
will make us sick. And doing things that brings us to our knees, never
sounds like a good idea.

The idea of having our systems drained and empty of any fighting ability
ward off any disease on it's own, seems ludicrous. How can we
beat down our army to near death, and expect them to win any war?

It's a tough choice for you to make, but only you can make it. Just don't
allow fear to sway you one way or the other; don't let false promises
and exaggerated hope to send you one way or the other, either.

Take your time, and do the research. And if/when you need some
help with whatever route you finally go, there will always be someone
here to lean on.

Good health!

John

Annie53
Posts: 3
Joined: Mar 2010

Thank you for your insights.

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I know you're very big on NO CHEMO but I think that sometimes your comments are really not accurate as to what people will say. "Not doing chemo; denying something that nearly everyone here will tell you to do, is not easy. Every post that tells you that chemo is what is keeping them alive, will add to your fears that you are making a tragic mistake doing otherwise."

I can't think of even one person who is going to tell someone else that they have to do chemo let alone your comment about nearly everyone saying to do it. True, many of us ARE doing chemo for whatever reasons we choose. There have been many people who have beaten cancer with the help of chemo you know.

"The idea of having our systems drained and empty of any fighting ability ward off any disease on it's own, seems ludicrous. How can we beat down our army to near death, and expect them to win any war?" You've got to crack a few eggs to make an omelet. I would imagine that TCM does similar things in it's own way, the point is to kill cancer cells. And the other point is to find something a person is comfortable with. Just like EVERYTHING, you are going to find pros and cons to both sides and advocates for both sides.

It's not "us against them".
It's "us against cancer".
-p

John23
Posts: 1832
Joined: Jan 2007

Re:
"I can't think of even one person who is going to tell someone
else that they have to do chemo let alone your comment about
nearly everyone saying to do it. "

I guess you've missed quite a number of threads here! There have
been many from individuals that are thinking of stopping their
treatments, and hoards of individuals encouraging them to continue.

We're all here for opinions, and we try to take from each view, to see
what fits out own needs. But try to understand the overwhelming
fear that one has, when they're trying to decide to break away
from "accepted practice".

Just as you dislike the threads that insist prayer heals, some of
us dislike the threads that insist chemo and radiation is the only
sure way to do battle with cancer.

If someone is considering a different route, they should be encouraged
to learn more about it, and to have the same faith that it will help
them, as in the mainstream route that often fails.

To be discouraging, one doesn't have to say: "don't do that";
one just has to say: "you're foolish if you don't do this".

There -are- other ways that work as well, Phil; There really are.

As always,

John

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I don't frequent this part of the site that much anymore. Too much goes on IMO (got to put that old disclaimer in there too...) that I have no constructive input on so rather than just post for the sake of posting, I often don't post. I don't feel anyone should be acting like that with trying to frighten people into decisions, we all need encouragement. Too often someone feels they know best for what all of us should be doing. This section is for questions like the one posed here and the "tough" approach isn't the best way to help someone I feel. (see above disclaimer)

But I'm sure more people catch flak for deciding NOT to do chemo than they do for deciding NOT to eat raw or try TCM.
Like I always ask people, are you comfortable with your decision and the potential outcome. If so, then do whatever one pleases to do.

I'm sure there are plenty of things out there that could work. I'm comfortable with what I've decided to do and I've had very good success with it especially considering where I started. I usually go with the "if it's not broken, don't break it" approach. But John, sometimes when I read your posts you seem to be saying that TCM rarely fails and that the mainstream approach often fails. I question that.
-p

John23
Posts: 1832
Joined: Jan 2007

Phil..

Re:
"But John, sometimes when I read your posts you seem to be
saying that TCM rarely fails and that the mainstream approach often
fails. I question that."

And you have the right to!

But I sure hope I don't come across that way to all.... I usually
add a disclaimer that I would "consider" mainstream if my route fails,
since that's the way I do feel... (Hell man, I want to live, just like
everyone else here, and I'll try anything sensible!)

But it greatly saddens me reading post after post, about how bad
people get from chemo and radiation, and yet they continue year
after year, getting the same terrible treatments because they're
too afraid of changing paths..... To read about their deaths, I find
terribly horrific. To suffer that much for so long, and to have it
fail, is a terrible thing.

I have had too, too many family and friends with cancer die after a
long battle with chemo and radiation. It was terrible when they got
"second cancers" from the radiation, and from the chemo; a friend
died of liver/renal failure due to the toxic chemicals given to stop
his cancer.

They didn't all die from cancer, Phil. They died from the treatments.
It's a sad statement, but the physicians know it well.

As I always try to include in any post regarding TCM:

"I don't know if TCM is what has kept me here this long, but I do
know that I haven't suffered the ills of chemo and radiation getting here."

One can take from that, what one desires.

(I wish I had the capability to save at least one life)

John

coloCan
Posts: 1850
Joined: Oct 2009

My decision to go route prescribed by docs was my choice and whatever negative effects I've felt and some were quite scary,nevertheless, I knew it wouldn't last forever and that tho there would be collateral damage, the chemo/rad/surgery/chemo was supposed do the job. Only time will tell.....

No matter which route one takes an essential element must be a strong/positive attitude.....steve

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I was told that for my cancer (mucinous adenocarcinoma of the appendix) the systemic chemo (FOLFOX) was of questionable value, and that they'd never know if it had any effect; however it was the best-guess chemo for my cancer.

After 7 rounds, I opted out - the side effects and known problems were not worth the possible but unknowable advantages of the chemo. My cancer can't be readily tracked - I've been NED since my surgery, and did undergo intraperitoneal chemo, which they know is useful.

You have to do what feels right to you. With experts advising that the chemo may not be useful, and the fact that the chemo is severely detracting from quality of life, then opting out for now seems reasonable.

PhillieG's picture
PhillieG
Posts: 4672
Joined: May 2005

I have not refused chemo. I'm a bit surprised at what you wrote only because usually the surgeons and oncologists are on the same page. This doesn't seem to be the case here.

You really have to ask yourself that if you don't do the chemo and it comes back, are you OK with your decision. Again, there's no guarantee with doing chemo it won't come back. Unfortunately with cancer there is no such thing. One has to find their comfort level and be able to make the decisions and be cool with them.
Best of luck to you in whatever you decide.
-phil

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

This is purely anecdotal but I know of two people (on the colonclub board) that had recurrences (after liver resections) in the lungs and after lung resection neither had adjuvant chemo. Each has been NED (one for 2 years and the other 6-7 years) since surgery.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

You can read my story on my personal webpage here. I was Stage III sigmoid colon cancer I opted to NOT do any chemotherapy, and instead I embarked on a VERY vigorous protocol that consisted of radical dietary changes (juicing/vegan/macrobiotics), Traditional Chinese Medicine, consultations with a Naturopathic doctor for supplementation and guidance, exercise, and a whole lot of prayer. It was a full time job I'm not gonna lie. But it was worth every effort I made and then some!!

I have remained cancer free with zero recurrences since August 2001.

Good luck and please research and educate yourself on your options.

www.cancerdecisions.com
www.crazysexycancer.com
www.thedoctorwithin.com

Hope this helps.

peace, emily

Annie53
Posts: 3
Joined: Mar 2010

Emily
Thank you for your thoughts. I had already made the decision after my surgery Feb.22 that I was going to change my lifestyle, dietary habits, etc. I have been reading AntiCancer by Dr. David Servan-Schrieber and following a lot of his suggestions. I also have been reading books and listening to tapes by Bernie Siegel. I plan to begin a visualization group soon. Today is day 10 after my first folfiri treatment and I am just now feeling a relief from the nausea. I have a strong faith and prayer life as well. The chemo just does not feel like the right way to go this time around. I did it 4 years ago, and the way I look at it the cancer came back. The way my oncologist looks at it, it worked and I had 4 years cancer free. I must say it is all so confusing. But I am glad to have this source of support, and am able to connect with others with similar situations.

John23
Posts: 1832
Joined: Jan 2007

Re:
"The chemo just does not feel like the right way to go this time
around. I did it 4 years ago, and the way I look at it the cancer
came back. The way my oncologist looks at it, it worked and I had
4 years cancer free. "

When we consider that it takes a cancer cell about 1-1/2 to 2 years
to grow big enough to identify, it's a bit disingenuous for a physician to
claim that a patient was "cancer free" for that period of time.

Cancer doesn't really "come back"; it is a normal cell that's been
damaged and no longer can respond to our body's directions.

When the cell is removed, it can't "come back", but the condition
that had allowed it to remain, will allow more damaged cells to exist
in the future, unless we fix that condition.

Damage to normal cells occurs often, and our immune system
usually removes the damaged/dying cells. When our immune
system neglects to do that job, the defective cell tries to stay alive
by using the fermentation process. Once again, it lives and grows,
but it's isolated from our body's orders, so it grows in any direction
it can, displacing the cells that need that area.

Isn't it odd....... that a problem so simple, avoids any organized
industry that claims it's trying to solve that problem?

Curiously odd.

Empedocles
Posts: 2
Joined: Nov 2012

Thank you for all the info. I have refused chemo and would like to try Chinese medicine. I'd appreciate any details you might be willing to share. Regarding Herbs and choosing someone skilled in this area. I live in San Diego.
thank you. Nancy

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

This is a very old thread. If you click on John23's avitar and go to his pages you might find more info.

You might get more info and responses if you start a new discussion topic.

Marie who loves kitties

isabella06
Posts: 4
Joined: Apr 2010

I loved your story Emily !! I plan on checking out your suggestions for alternative approaches . I am faced with the chemo vs no chemo decision as we speak. Sounds like it is rare for a surgeon of oncology and an oncologist to disagree but that is what I'm wrestling with right now.Both Doctors are highly respected with tons of experience which makes my pathway even harder to determine. I have been on a "chemo cocktail" every week for three years and just went through hipec surgery after my colon cancer mets to my ovaries. My body is screaming no more chemo, but I'm playing the "what if" game in my sleep (when I get any). I wasn't expected to make it through the first year , let alone three. I firmly believe it was a combination of chemo , prayer , meditation and a positive attitude .At this time, I am unable to exercise due to severe Neuropathy (which I got from the first chemo), but if I can only move my pinky finger I will fight .I eat really healthy , but haven't crossed into vegan territory yet. You are an inspiration and thank you so much for the information.

Empedocles
Posts: 2
Joined: Nov 2012

I would like more details about your treatment. I have also refused to chemo. I would appreciate your sharing path.
thank you. Nancy

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

Was diagnosed stage 3, did 6 months of chemo, then found out it was in his lung. (we think it was actually in his lung the whole time) He had a successful surgery and now we are considering all the options. Because the chemo made his feel horrible, but didn't work, he won't be doing either folfox or folfiri again. He's working with an herbalist to get on a strict supplement protocol, making dietary changes, exercising more, juicing, etc. His oncologist recommended pet scans ever 3 months for a year to keep a close eye on things. One other option is doing avastin with just a bolus of 5fu (not the 48hr pump) evey couple of weeks. We are still thinking things over. Either way, he is NED after surgery and we feel that this time around chemo isn't the answer. It's a very personal choice and one that only you can make. I wish you all the best with this decision!

survivor_2_survivors's picture
survivor_2_survivors
Posts: 8
Joined: Apr 2010

I had a resection on my colon 2 years ago and had 4 treatments of chemo which made me sick so I went the natural route. Naturalpathic doctor, I exercised and ate healthy already, was told sugar feeds cancer cells so I went without sugar even fruit sugars. Then this Feb a CT scan showed a tumor on my lung so I just had part of my lung removed, now starting chemo. I was told that when cells are damaged your immune system can't tell which ones to destroy because they are a part of your body, the immune system thinks they are normal cells because your body made the cell in the first place. Your DNA changed so that's why chemo works because it kills all fast growing cells.
It is hard to know which route to take. I always thought that my body did this it should be able to fix itself. I have an uncle that had liver cancer and was told he had 6 months to live. He decided to go natural and has been cancer free for 8 years now. You just don't know what will work for you. It's not only a personal choice but it's also a hard choice. :)

isabella06
Posts: 4
Joined: Apr 2010

I hear you on the hard part Sister !!!

eitter
Posts: 58
Joined: Dec 2006

Annie et el.......

I was my Oncologist FIRST EVER Stage II patient to refuse post surgical Chemo AKA mop-up Chemo.

Mind you again I was Stage III and at Stage IV I could have made a different decision.

Rather then take up the bandwidth here please go see my cancer journey on my webpage to kind of give you the reasons why I went that route, if I copied and pasted hear it would just take up to much space. And I have been remiss to update my site this year...but heck it has been a good year. But the important two years of treatment is there. http://www.runlizrun.com/journey.htm

O and the best news is I am four years out and my Oncologist deemed me "Cured", hefty words NED works too! And he loves my story....the story of proving him "wrong".

My decision was MY DECISION and I was 100% behind it, to me that is the most important aspect of all of this, you have to believe in your treatment, mentally behind it!

If you have further questions, please contact me.

Liz
66Rose@q.com

Lifeisajourney
Posts: 217
Joined: Apr 2010

what i did; colon cancer 12/12/08 surgery 3t 3/30 positive nodes. very strong at 6 weeks after surgery. started folfox,,,nearly killed me, 7 sessions/hospital 10 days. 5/09 told to go home and recuperate. I was never the same. 3/10 recur mets to liver. 6/1/10 surgery at one of our 2 cancer hospital.,onc on staff. could not do, liver a mess, lots of liver damage from chemo.refused chemo. I have been referred to hospice 10/12, haven't decided yet..bedridden from chemo/cancer. what i wish i had done. after inital surgery, refused chemo. when it met to my liver I probaby would have tried folfox then...i do believe chemo is not the answer and can kill you...but that is my decision and belief..only a fyi on my life. i do not think i would have survived another chemo, my body would not have endured, pat

thingy45's picture
thingy45
Posts: 582
Joined: Apr 2011

I too refused chemo and I am NED, cleaner then ever is what my onc said after my latest colonoscopy and endoscopy. CEA is rising a little, but still very low.
I do my own health routine, try to eat right but do cheat, drink some wine and most of all I LIVE and so far it works for me, BUT again this was MY decision and mine alone.
Positive thinking, meditation and I stress again, lots of laughter and happy thoughts.
not always easy with my daughter so very very ill on heavy pain killers etc. (MS and needs a brain surgery). I live day by day, new man in my life who makes me laugh and makes me enjoy every moment, music and the grandkids. I am a very lucky woman.
Marjan

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

And some are no longer with us, perhaps a new thread on this please.
Winter Marie

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network