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A brutal post:

coloCan
Posts: 1956
Joined: Oct 2009

Based on my life and readings, this is what I currently believe........

By the time most of us get diagnosed, more than half of us will be stage 3 or 4.......

Of us stage threers, odds are about even that we'll be around at that major milestone of five years and theoretically happily ever thereafter......However, I have an equal chance of a metastasis rearing its tentacles elsewhere in my body before that five year mark**. I am starting to wonder whether there really is anything I can do for myself to increase my survival odds or delay what may be inevitable.

Thus, it behooves me to learn as much as I can, particularly of current research*** which is being conducted worldwide to cure or better understand cancer. As my docs don't have the time I do to expend on the internet as I do, I let them know of major findings when we meet, in case they didn't get to them yet.One site that I recently found listed hundreds of cancer genes for all sorts of cancers, sixteen of which applied to CRC (TP53;EP300;MLH1; just to mention some besides BRAF or KRAS^^-what this all means for my case I truely don't know). I've emphasized "nanotechnology" as a potential lifesaver many a time and do so again tho its still experimental. Other approaches by scientists and researchers around the globe also show potential; its a race between time and the practical application of these results, I guess as there are still ony seven FDA-approved chemicals for CRC (tho I know of several others in trial phases, such as Imprime PGG,Perifosine; and NKTR-102, as per the emails I subscribe to.)

All this being written, I still have to believe I will beat this just like I had been trying to overcome my emphysema/bronchitis.I know I've started off with damage to my lungs due to years of tobacco as well as damage to my liver due to many years of alcohol--cold turkeyed both when I stopped. Of course, the two main organs CRC spreads to are liver and lungs. I have no one at home to talk to like this but myself (it would frighten my girlfriend)and thats driving me crazy so I post this as a therapeutic exercise for myself yet......steve

**The odds for CRC seem to be inherent in the beast as figures recently published for people in southern Spain, I think, show the same odds there as for those in US with CRC

***For example,today item published about researchers who are focusing on drugs that target and destroy cancer stem cells as allegedly they are more harmful to us than the tumor itself

^^About 40 % of those with metastatic CRC have a mutated KRAS gene

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Steve,
I think that’s why we are all here. Even our caregivers don’t fully understand what goes through our heads with this crap. I think our journeys would be just a little tougher with out this board. I know mine would.

Now get your damn positive attitude back where it belongs!!!!!! :):)

These are words to a very old song.

You’ve got to accent the positive, eliminate the negative. Latch on to the affirmative and don’t mess with mister in-between.

Kerry

coloCan
Posts: 1956
Joined: Oct 2009

bluntly, its my girlfriend that I live for as I wouldn't have cared one way or the other if I were totally alone; I would;ve needed a nursing home during my Tx in light of how incapacitated I was......I just can't be positive all the time and as long as I don't let the depressive times linger too long I usually can bounce back......There's still alot of bouncing around to come...steve

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Your damn right I am right. I’m an old coot. ( I got called that recently on this board and I kind of like it.) My dad always said “you are too soon old and to late smart.”

Kerry

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

Re:
*"current research*** which is being conducted worldwide to cure or better understand cancer. "
*"One site that I recently found listed hundreds of cancer genes for all sorts of cancers"
*"the two main organs CRC spreads to are liver and lungs"

Well, the list of things that can cause cancer is endless, and why wouldn't
it be? A cancer cell is just a plain old normal cell that refused to die, and
instead managed to remain alive via the fermentation process.

The problem isn't "what causes cancer", the problem is:
A. Figuring out why the immune system didn't eject that cell, and
B. How to get the immune system to do what it should be doing.

And there have been several products that were being tested
that used the immune system.... Immunotherapy isn't new. If you
research the products (like Trovax), you may have a better
idea of why there isn't a cure for cancer on the market.

Since both the liver and lungs are the main organs that process
blood (the liver takes out toxins; the lung adds oxygen), the blood
goes through those organs first. Seeing cancer cells ending up
stuck in either of those organs, makes sense...

The cancer cell has no "brain", it's just surviving like an amoeba.
The cancer cells get no information from the body or brain, they
just consume glucose stolen from our good cells, and poops out
lactic acid.

The lactic acid is converted back into glucose by the liver... Too
much lactic acid, and the liver gets overloaded and can't clean
the blood as well...

So... the cancer cell doesn't really want to kill a perfectly good host,
but it doesn't have a brain; it has no direction, it just remains alive,
just as one in a vegetative state on life support.

You can't cut the intake of your glucose, because you'll just help
starve the already starving good cells.

Cancer grows and displaces the room good organs need, and steals
more and more glucose as it grows larger and larger. The good
cells suffer without glucose, and we lose weight, energy, and the
ability to fight off diseases, since the immune system is being starved.

Does chemotherapy build up the immune system, or destroy it?

There -are- things that can fight cancer cells without the harm of
present-day chemotherapy drugs. But unfortunately, the fear of
cancer, and the fear of not doing all the right things; the "accepted"
things, and causing one's own demise, keeps cancer victims coming
back to the industry for more of the same......

I keep trying to help, by screaming out the same dialog:
"Do not let fear be your guide."

We were all given good common sense, and good survival instincts,
but we all too often neglect our own intuition and senses, and leave
our survival in the hands of others to make our decisions for us.....

Why? Fear. Fear of making a mistake that will cost our life.

There are plenty of people right here on this forum, that have gone
their own direction; listened to their own instincts and sought out
ways to stay healthy in spite of a lousy prognosis, and their refusal
to become another Guinea Pig for the already wealthy industry.

There are indeed, better ways. And there are ways to make
the mainstream medicine more palatable, as well.

(most of it can be found on threads of this web site!)

Better health!!

John

coloCan
Posts: 1956
Joined: Oct 2009

to drastically reduce or eliminate completely negative side effects while more effectively targeting and killing cancer cells only. Its not the medical profession per se or Big Pharma at all that I trust; its the individual and collective groups of men and women who for whatever reason have devoted their lives to caring for people with cancer and trying to find a cure or make living with it more endurable. Call me a coward if you will but I AM afraid NOT to continue with whatever comes next for it was chemo/radiation/surgery by dedicated people that have thus far kept me here, in my opinion.I understand there are others here doing quite better than I who have indeed taken another route.Call it fear to change or trust in my doctors that hasn't been as yet shaken but for now I'll do as instructed.I know I'm eating much more healthier now and I'm back to taking some of the supplements I did before this began, after clearing all with onc but if further things happen, its chemo I will look for ,as of now....steve

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

Re:
"Call me a coward if you will but I AM afraid NOT to continue with
whatever comes next for it was chemo/radiation/surgery by
dedicated people that have thus far kept me here, in my opinion."

No-one will ever call you a "coward" for doing what you feel is best for you.

I had been called a coward for not taking chemo, even though
both oncologists gave it a 2% chance for "better odds"...

Those people said I should have taken it for "preventative" medicine,
even though both oncologists were adamant with their dialog, that it
can -not- be used as a "preventative" medicine.

The point I try my damndest to get across, is that -if- chemo and
the usual cancer remedies are starting to fail a patient, they should
look to other practices, not continue down the same failing path.

I don't feel any different about TCM, or any other practice; if it
begins showing signs of failing me, I'll try something else.......

I'll try chemo, if I feel I need to, or turn to a radiation treatment,
if it's the only feasible way to kill a tumor.

But to take toxic chemicals because I wouldn't want to look back
and wish I did?

If I insisted on chemo, got permanent neurological problems, and the
cancer eventually got worse, would I wish I did something else?

Would I continue taking the same toxic compounds, keeping to
the theme that I don't want to end up "wishing I did"?

I guess I'm just getting weary of all the problems I see happening to
good people on this board; people that thought their doctors were
doing what was best for them....... only to be moving to hospices...
I'm just tired of spending the wee hours crying for those that are
getting worse instead of better.

If one takes the usual chemo routes, at least after the rounds of
chemical therapy, they really oughta' try some of the alternatives
that seem to be working for others here. Emily does juicing, and
seems healthy as a horse. It's not expensive, and it can help
survival. TCM can work near miracles (in my opinion), and using
any of these practices after the chemo and radiation can very
well save a life or three.

Putting all one's stock into chemicals and radiation that has a terrible
history of failure, just isn't doing it for too, too many. At least they
should try the alternatives after whatever they feel the doctor wants
them to do. Call it "insurance".

I'm sorry of you got insulted Steve. It wasn't intended to insult you.

I wish you the -best- of health !

John

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"The point I try my damndest to get across, is that -if- chemo and
the usual cancer remedies are starting to fail a patient, they should
look to other practices, not continue down the same failing path."

I always read your posts, John, because they're intelligent, articulate, and interesting. However, they are also wrong. The problem is that you want therapies to make sense. But that's a kind of arrogance -- they don't have to make sense to you, or to anyone, to be effective. Conventional, evidence based medicine, requires that a good cancer therapy increase survival rates. You don't seem to care about that -- you want it to help and not harm the immune system (if I've understood you), because you think cancer is caused by a defect of the immune system. Well, maybe that's true. Does it follow that a therapy which harms the immune system will be ineffective? No, it doesn't follow. Of course, we want to make sense of the facts, but the facts come first. Chemotherapy improves survival rates. That's a fact, and if it doesn't make sense to you (or to me), that's your problem. It doesn't have to make sense to be true.

--Greg

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

Are you saying that if chemo isn't working for an individual;
that if their cancer is progressing in spite of chemo, and they are
getting sicker and sicker taking an ineffective treatment, that
they should continue taking the treatments?

In my opinion, as I tried my best to explain:

"The point I try my damndest to get across, is that -if- chemo and
the usual cancer remedies are starting to fail a patient, they should
look to other practices, not continue down the same failing path."

And I really can't understand the problem with that opinion.

Oncologists will tell a patient when a treatment is found to be useless,
and they will abandon a treatment. If no other treatment is available
for that patient, the doctor will usually suggest seeking other remedies,
usually "trials" of new compounds with no prior history.

Are you saying that the patient should insist continuing with the same
treatment instead?

Re:
"The problem is that you want therapies to make sense. "

I come from "the old school", where if it doesn't make sense, it's
probably best to avoid. We were all given a gift of good common sense,
and when we disregard it, we most often find ourselves in trouble.

I don't know about you Greg, but I have all the trouble I can handle
at the moment. I try to remain aware of what's going on around me,
and if something seems wrong, it usually is.

Common sense has got me through 66 years of life and 47 of marriage,
and I'm into my limits of prognosis.

Maybe cancer will kill me, maybe it won't, but I'm doing what I
feel is best; I will have no regrets, regardless.

And as I stated: if I see something I'm doing isn't working, I'm
not afraid to change paths.

That's all I'm suggesting others do.

I'm sick of reading of bad things happening to good people;
good people who sometimes put too much trust into things out
of sheer fear, instead of doing what their instincts tell them to.

We're all here for the same reason, and when one of us suffers,
it affects us all.

My sincere best wishes to you. I always appreciate the feedback!

John

AnneCan
Posts: 3692
Joined: Oct 2009

Hey John,

Congratulations on 47 years of marriage, especially being so young when you started. That is inspration in itself! I hope you have started planning the big 50th shindig!

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

"Are you saying that if chemo isn't working for an individual;
that if their cancer is progressing in spite of chemo, and they are
getting sicker and sicker taking an ineffective treatment, that
they should continue taking the treatments?"

Perhaps they should. What matters is what the available evidence says about their prospects of survival. Why do you have such a problem looking at the bottom line: Will I live? If the chemo poisons make you feel really bad, does it mean you're close to death? Now, think about it. It doesn't really mean that, does it?

I'm just asking you to temper your opinions according to the evidence of survival. Conventional medicine accepts this discipline -- why are you immune to it?

--Greg

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Maybe some people's instincts tell them it's OK to do chemo.
-phil

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lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Steve,

I believe that none of us knows what is going to happen to us.

I believe that trying to live as positively as possible helps our BODY, MIND and SPIRIT. Positive affirmations! There are miracles and there are things we can do to help. Exercise, positive thoughts, fresh fruit and veggies are just a start. Pitch or reduce all the fat, red meat, etc. Drink healthy juices. Try it for a week.

Kerry is right on target. He said it extremely well. Now get your damn positive attitude back where it belongs!!!!!! :) You’ve got to accent the positive, eliminate the negative. Latch on to the affirmative and don’t mess with mister in-between.

John said a powerful thing too --- "Do not let fear be your guide."

We all have our low times and we are here for you, Steve. Keep focused on living and loving.

Run this post off, post it to your bathroom mirror, use one for a bookmark, and keep one beside your bed stand.

You can be bitter or you can be better. This is tough love - but honey, we love you!

Lizzy

coloCan
Posts: 1956
Joined: Oct 2009

I think I understand your perspective, John and have read probably most posts since I found this site so I know it contains a variety of viewpoints, which is to be expected considering our diverse backgrounds but common affliction. I try not to think of what ifs.....but find its unavoidable and thats scary......As far as postive attitude not influencing outcome--I know it does....
Lizzie, I have, now that I can eat again, drastically reduced my intake of red meat (used to love well-done, burnt burgers and steaks)increased fruits and vegetables(used to call lettuce health food), seeds and nuts ,etc (read all material at ACS/AICR etc on diet and cancer) stopped overdosing on viamins in pill form (Which probably helped feed my tumor in the first place along with my poor eating,history of tobacco and alcohol..) Only thing I did that was good for me since a teenager was exercise, which I'm getting back into since this began....Don't mean to step on anyone's toes......steve

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Steve you’re not stepping on anyone’s toes. You’re doing just fine. Each of us have a primary focus in our journey. The value of the board is to combine all the focus points to find what fits for us. Now what’s all this happy bull about red meat?????

Kerry

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Of course positive thinking isn't for everyone.
Here's one (of many) articles about the topic.

What are the benefits of having a positive outlook on life?
by Emily McDowell.
"Our lives are dictated from the inside out. Life on the outside is nothing but a mirror image of what is going on in our inside world. Our thoughts and self-talk, which is the endless stream of inner dialogue that runs through our heads, determine how we perceive the world around us. If our thoughts are constantly negative and full of self-pity, then nothing will ever go right - even if it does, we'll convince ourselves that it could have been better. We'll never be happy, and it is hard to accomplish anything worthwhile in life with continuous negativity. But if we look at situations in a positive light, then chances are that outcomes will be more favorable.

The Law of Attraction states that thoughts have an energy attracting whatever a person is thinking, whether positive or negative. Just like a magnet, we attract the same energy that we put out. Nobody wants to attract the negative, unless he or she enjoys self-mutilation and conflict. If you want to attract good things in life, the only option is to be an optimistic thinker.

Having a positive outlook on life has an advantageous effect on a person's overall well-being and longevity. There is scientific evidence to back up this claim. Clinical studies performed by the Mayo Clinic have provided statistical data and solid proof that optimists outlive pessimists due to several factors. These include decreased stress levels, lower rates of depression, greater resistance to colds and viral infections, increased overall sense of well-being and good health, reduced risk of cardiovascular disease, improved breathing, lower cases of emphysema, better coping, reduced stress and better problem-solving and life-coping skills. Also, optimists tend to lead healthier lifestyles, exercising more, eating healthier and not smoking or consuming excessive amounts of alcohol.

Why does having a positive outlook on life have a positive effect on our health? Although there is no exact answer to this, some experts believe that serotonin, a chemical released from the brain when a person experiences happiness, may reduce the effects of aging and boost the immune system. Another theory accepted by many doctors is that physical and mental stress impacts the body leading to weaker organs, which may become health problems with age. People who have a positive outlook on life experience less of this wear on their system due to less stress.

We can choose to live any way we desire. We are as free to complain as we are to maintain a positive outlook and see the bright side of the worst situations. If we are positive, the impossible can suddenly become possible. A negative outlook will waste energy, but a positive outlook will create energy and attract opportunities that can help us achieve whatever we desire. Positive thoughts empower us and make us feel good, both inside and out. There is no risk involved in positive thinking - the only thing that might happen is we become happier and more satisfied with life. So we should observe problems as opportunities, see solutions when problems occur, and look at the bright side of every situation. We'll be healthier and more successful in a life that is too short not to be happy."

AnneCan
Posts: 3692
Joined: Oct 2009

Hey Steve,

We all have our moments of doubt, worry etc. I think that is very normal. From your posts, it sounds like you are doing well overall. You are a source of information + inspiration to our board; thank-you. Take good care of yourself.

coloCan
Posts: 1956
Joined: Oct 2009

ditty......I just wanna do unto others what others had done for me when I found this site a month after surgery.....Thats what i want to do here;outside of here, yeah, I'd love to have some fun and laugh as much as I can (when appropriate).....Need to try to go to sleep for some driving set for tomorrow (gulp, there goes the Ativan). See ya's all again Friday.......steve

and Thank you Anne (we have the same last name "Can", as in we can beat this.....)

AnneCan
Posts: 3692
Joined: Oct 2009

We do have the same last name (Can)-I chose it for 2 reasons-I Can do this + I am Canadian. We also joined this forum ~ the same time. Good luck tomorrow.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

G'day steve,
I was reading thru the above and thinking,something I do a lot of. I was invited out to a social event at the fishing tackle shop I patronise. It was for 6pm this evening. I decided to go and replied to their invite. I arrived at five to six to see a milling mass of humanity. It freaked me out and I turned around and went home. I have been thinking about it since and it occurred to me that somewhere in the 12 years of my survival I have divorced from the human race. I live alone,I work alone,I fish alone ,I don't have friends,I don't go out or seek companionship. As a matter of fact if it weren't for medical people i would not see anyone..I am going to write a survival hand book. Rule one,Survival is easier if you don't care if you survive. Rule two Survival is easier if no one notices. Right I have to think some more, this survival hand book may be harder than I thought. HMMMM what are the symptoms of cabin fever:):):) Ron.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

"The secret cause of all suffering is mortality itself, which is the prime condition of life. It cannot be denied if life is to be affirmed."

That being said, I think we all want to do well and live enjoyable productive lives as long as we can. One thing with reading/researching that I have found are those statistic ... stuff. I do not put that much stock in it. Much of it is old data so it's a moot point. Some is valid I'm sure but trying to separate it is difficult.

This "discussion" has been going on with TWM & TCM for a long time. It really doesn't seem to change much either. One side is for chemo (hopefully for as long as it's effective and not any longer) and one side is not for it as a first choice for treating cancer. Everyone reacts differently to treatment so there is no one size fits all approach we can follow. Many people have compromised immune systems and many do not. I've yet to, in 230+ treatments, have one held up due to anything compromising (blood counts, infections, whatever...) so obviously we are all different.

ALL of the treatments, whether it's TCM or TWM are chemicals. I would imagine that some traditional chemo protocols have come out of organic and possibly herbal compounds at first and that other organic herbal substances can kill you too. It's finding the right balance of the right stuff.

True, today cancer is a business, a REALLY big one. There is money to be made with both approaches and that is part of the driving force of research. I also believe that some scientists out there want to find a "cure" for cancer, screw the monetary aspect of it. Survival rates are up for people with cancer. OK, a stat I can live with. I would imagine there is a percentage of that which is due to TCM or other methods but the majority of that is from TWM mainly since that is watched more closely.

I agree we should not let fear dictate our choices. That goes for fear of dying from cancer, fear of no treatment, fear of taking chemo, fear of taking TCM.

"The truth is, once you learn how to die, you learn how to live."

Steve, a very good post on how you see things.

"Do not let fear be your guide." is a good rule to follow. I'd like to add:
"Do not let someone else's bad experiences frighten you."
-p

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