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UPDATED "put up or shut up" I have made the core argument clearer I hope SUGAR

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

UPDATE 16aug2011.

checkout blakes post thats clearer in some respects
http://csn.cancer.org/node/224351

A wise mentor, not on this board, suggested the only way oncologists will start advising walking is when a patient who dies sues then for negligence. I still have the uptmost faith in my doctors, our society and system, but if thats what it takes to get the doctors to use their position of authority then i guess thats what it has to be. a class action in australia or the usa. it will happen soon i feel, as so many lives are being lost due to negligence of all concerned.

The exercise / walking message is not being delivered clearly or forcefully enough on bowel cancer australia website, or csn for that matter. so the doctors are not alone in dragging the chain. It won't be long before the walking message is posted everywhere. when that day comes shed a tear for the thousands of lives lost due to the delay in getting this simple message broadcast around the world.

hugs,
pete

ps you are invited to join the walking post.

ORIGINAL POST
Is this to much for CSN ? [ the concept of patient being assertive in the medical system]

Who wants to bet if they print it and post it in the office ? [will my doctors support my idea]

Maybe we can pay it forward, get off our own butts and save some other lives.
[the concept that getting other crc's to move, to walk will save their lives]

does anyone think emailing this to your doctor is to pushy ? [no one answered this so far]

maybe we should just print it ourselves, laminate it and then go and post in the doctors
offices our selves. Oh that way to militant. [customer service, i really won't care thats top class, if I am wrong explain it to me, if I am right then adopt the study and give life saving life style advice to crc stage 1-3 patients. Its simple to me.]

hugs,
pete

I just emailed this to my ONC and COLORECTAL SURGEON
||||||||||||||||||EMAIL I SENT BELOW||||||||||||||||||||||||||||||||||||||
RE ITS ABOUT TIME lets push the envelope just a little, print 2 pages, put on your patient noticeboard. THATs ALL

Dear Onc and Surgeon,

Will see each of you soon for my checks, just a note to say a big thanks for the great care so far.

Of course I don’t expect it to stop now either.

I saw this article, that I have been following myself since Christmas, but now we have another study backing up exercise.

Would you guys mind printing off the study and putting it on the office walls to educate your patients about exercise benefits.

Just an idea to save a life. Leading ONCOLOGIST you are a top oncologist in a position of leadership of other oncs.

Leading colorectal SURGEON you are teaching new colorectal surgeons.

Just a suggestion or is it a plee. You see between the two of you got new and old doctors covered.

It would be great if you guys efforts with regard to motivating patients to exercise helped keep Saint Vincents at the ledging edge of cancer care in Australia , which is a place I feel it belongs.

I cannot even blame the DEXAMETHASONE for the contents of this email, just my good intentions and attempts to buy indulgences.

This is my walking post, where I have been pushing colorectal patients to walk to prevent recurrence.
http://csn.cancer.org/node/223799#comment-1102482

This is the new study news item again advocating survival benefit for exercise.
http://www.medicalnewstoday.com/articles/232406.php

Yours sincerely,

Pete43lost_at_sea
||||||||||||||||||||||||EMAIL ABOVE SENT TO ONC AND SURGEON|||||||||||||||||||||

The walking post
http://csn.cancer.org/node/223799

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

My husband walks on a treadmill for one hour every day except for a few days
after treatment. When he mentioned it to his onc....was told it was important to
keep it up after chemo.
Linda

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear linda,

that's really good news but the wrong way around. where is the prescription from the onc for the treadmill. your husband is the patient telling the onc. good on him.

the onc are supposed to lead us in this battle, we are being ripped off.

we loose our lives and our money because of their negligence. its time to stop mucking around. i am not pulling any punches.

its simple, get this message on csn.

then get every onc in the usa telling every crc to walk at every appointment, if they don't gived the warning then they get sued by a class action for negligence. is that simple.

the onc main message will be walk, oh and then they can say don't forget the chemo.
now if chemo makes you to ill to walk, well thats the 15-40% chemo benefit against 53% walking benefit. at this point i would stop chemo and walk. but that is each doctor and patients decision.

after the onc's get the message, then the whitehouse for obama, or has it been nicknamed the blackhouse. either way thats a great message for obama to deliver to the usa and to the world. unfortunately us aussies follow the usa lead in most things. like crc. i am proof of this.

its time for fat usa to be thin usa, you simply cannot afford to be fat anymore.

i want a treadmill in the home of every crc survivor yesterday.

given the problems some of us have, maybe it needs to be in the bathroom.

then some bathrooms are not big enough. i got a solution, i got my portable loo in my car.
a portable loo next to the treadmill is all that is needed.

hell lets just walk outside, with nappies, or doogy poo bags. and take the risk.

i will have my immodiums right now.

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

Benefit of exercise? Did your Onc say something? Were you challenged by someone on CSN?

I suppose I just don't understand the tone at the start of the message.

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

to the actual review:

The importance of physical activity for people living with and beyond cancer: A concise evidence review

Note that this is not a "new study", rather it is a review of past studies that have evaluated the benefit of exercise. Still, it is an easy read with a minimum of technical jargon, and it might be helpful to share with your oncologist if you want a prescription for physical therapy.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i have been struggling to achieve this for myself and maybe motivate others.

the report clearly state the doctors absolute negligence in failing to advise about this.

no doctors push this really really hard that i have met.

maybe most on this board should have a break from posting and go for a walk.

the few enightened souls who have embraced exercise, who have encouraged my efforts, i appreciate.

sit on the couch and wait for the crc!!!!!! i am going for a walk.
i have a feather in my quiver, except this arrow does not kill it saves.
read the walking post.

its always been, survival of the fittest, now its just been backed up by more science not just commonsense.

obviously its also survival of the most intelligent, after all you gotta be able to read and understand articles.

oh yes, this is the tip of the survival iceberg. after we get exercise widely accepted and pushed, well then diet.

blake does this get stage4 up from say 10% to 20%. your the stats man ?

this report is not stage specific is it ?is it ?

i would think those who are so desperate would embrace the clearest and simplest tool that can help save them. but not many stage4 have joined the walking post.

oh of course we are all , different, not every treatment for everyone. i say thats rubbish,

the frustration is i have not walked enough myself, that my friends here have not walked enough, that the doctors have clearly failed in there duty of care.

our fate is our hands, my fate is in my feet.

got to go walk, i hope i have some company today.

hugs,
pete

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

"this report is not stage specific is it ?is it ?"

For CRC survival it is. The studies mentioned were about post-surgical recurrence in Stage 1-3.

You have a good message, but to be frank, I find your delivery a bit off-putting. Use a little sugar and you may get a larger audience.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

we are what we are, sweet or bitter.

exercise is a bitter sweet message.

i am very very very sorry our stage 4 friends cannot benefit from this,
dammitt another reason stage 1-3 better get moving fast, you have a limited window to help yourself.

maybe all the other more eloquent long term crc guys and girls can be involved.

begs another question ? what about neds ? i bet yes.

i did not take my kikds to school, i went walking instead. i am walking for my kids.

blake, can you please sugar coat the message for me and do a new post, lets just save a few lives.i sweetened the title.

its the doctors job to save lives , not mine!!!!

they can do so much better!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

can't they ?

hugs,
pete

ps sell your big pharma shares.
blake if every stage 1-3 did this how lives would be saved per year.
how much money not spent chemo for stage 4 s ?
profit or health ?

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I have to disagree on this Pete or at least add something to it.
WE have a HUGE responsibility in our own health. I know I just took one line from your post but it makes as much sense as saying "I put my kid in school and it's up to the teachers to make them smart kids". As a parent (which you are too I believe) you should know that this is not how it works. Parents MUST also be involved with their kids outside of school. You don't just drop them off in the 1st grade and pick them up in 12 years and have a smart, well adjusted kid. We must be involved with our healthcare just as we must be involved in our children's education.

Of course we need the expertise of our doctors but we have to help ourselves and help them too. We can't have a "hands-off" approach. They can, and do, make mistakes at times. We've got to be part of our solution IMO.
-phil

pete43lost_at_sea's picture
pete43lost_at_sea
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phil sorry help me understand, i agree with you thanks

why everyone here is not emailing there doctors ? the silence is heart breaking for me.

i will not worry about my friends here who have been notified of exercises benefits and don't join in. thats cool, its there choice.

its just all the recently diagnosed patients stage 1-3 are ARE NOT told.

god dammitt they compel us to take chemo for 15% and don't mention exercise for 53%

is this study just crap ? i say no, by everyones silence i guess its i'll wait on the couch for crc.

the doctors are scared shiiitless, because some may question adjuvant folfox, which buys 15% survival boost for stage 3 at about $20000 for the drug, when you can get a greater survival benefit for walking. come on any io missing something here.

as a forum for crc its our responsibily to care for new crc patients.

why are all new stage3 not joining the walking post?

so why why why are all stage 1-3 not exercising or at least being told they really really should be, that the savings are around 53% ?

answer me anyone ????????? for gods sake what this forum about

i did my 40 min on the treadmill today. has anybody else ?

using stats i recon i'll get an extra 25 years of life if i do 4 x 40 = 160 min walking a week. based on my age 44 living another 50 years, then discounting that by 50% giving 25 years.

that over 5 years to be cancer free that 5 x 50 = 250 weeks
that 250 weeks x 4 walks = 1000 walks over 5 years.

1000 walks buy me the equivalent of 25 years extra life which is 9125 days.

so 1000 walks buys 9125 days of life

or 1 walk buys 9.125 days

now thats just with exercise

150,000 new crc in fat usa each year.
assume 100,000 stage 1-3 crc
53% only 53,000 lives saved every year if fat usa becomes thin usa.

not sorry to be blunt,

its as bitter pill exercise and diet, for just shallow and smile.

i am still new on this board, this science is not new. i find it, it changes my life, but so few others. am i misguided, or just lucky i am an early adopter, or just so dam desperate to beat crc. my doctors did not tell me ? i am pissed. they did not encourage me ? i wanted a pat on thre back from them ? or a pat on the back here ? not many here but a few. I'll pat myself on the the back. just did it, gee i feel better now.

when i see my kids i just walk. i have a dream, i want every crc stage 1-3 in the world to start walking now. if i am gonna dream, its gonna be big.

i feel we are a crucial point, the studies out, lets do the epatient dave stuff, lets use the net from some huge purpose like saving crc lives. thenmaybe the other cancers who benefit can tagg along.

i am looking after myself walking, posting here. between all of us crc on csn we could really start doing something so far more effective than posting.

phil thanks at least for replying, it bumps the issue a little higher. maybe a extra new diagnosed crc will start walking, mate that 1/2 a life saved. we could split the good calma 50/50 its still 1/4 life each. that person might buys us lunch one day, or remember us kindly if we don't make into the tail club.

hugs,
pete

northernlites
Posts: 96
Joined: Jun 2011

Hi Pete,
walked again today and I felt so good after I even folded laundry. I agree walking helps. I love your inspiring attitude...

tessa

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i have one fan. gee i miss gracie, she is before your time.
your nice comment got me moving. thanks, its a struggle for me.
i used to be an elephant in a past life.

hugs,
pete

yoga
Posts: 87
Joined: Feb 2011

Well, I am stage 4 (diagnosed last summer) and I have worked incredibly hard to get myself moving. I was so weak that I couldn't function properly. Yesterday I gardened for 1.5 hours and was on the treadmill for 50 minutes with 3lb weights. Today it was yoga for an hour (didn't start yoga until after my diagnosis), serious house cleaning for a couple of hours and a short moonlight swim. Tomorrow my day will start with a 4.5km power walk and I have at least 2 hours of gardening to do as well. Will all of this help me survive longer? I don't know, but it certainly won't hurt me. And . . . . should I ever be a candidate for surgery, my body will be strong.

Exercise also serves to elevate moods, calm the inner self, provides a sense of accomplishment each time an activity is completed, allows us to feel pride in ourselves and leads to greater self-confidence. I believe anyone - with or without cancer - should be up and active.

I also believe that all medical professionals should - no, need - to push people to become more active, to whatever extent they are able. It is also my belief that exercise will lead to a better quality of life for those of us with stage 4 cancer, those with stage 1,2 or 3 cancer and the rest of society in general.

I do miss golfing; there are just not enough outhouses on the courses . . . . sigh. And downhill skiing - yikes! - imagine being on a chairlift and suddenly needing a bathroom?!?

Anyway . . . . that is my two cents worth.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear yoga,

its nice to have a really supportitive reply.

i hope exercise keeps you strong.

hugs,
pete

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Hi Pete,
Yes exercise is part of the survival, I just had my second CEA test and all came back clear. still NED. I juice and take Monavie juices with 19 different fruits and berries including Acai and Lychee, both known to fight cancer cells. I walk and I swim.
Get moving is always good even if you start with 5 min. on the treadmill and bring it up every day a little more. Bathroom always close by.That is how I started now up to 30 min.
twice a day.
Motivating others is good keep it up!
Hugs Marjan

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i hope you stay ned.

i hope someone can check the study and see if it applies to neds.

after surgery all stage 1-3's are ned by definition.

hugs,
pete

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

Hi Pete,
Just because one doesn't post in the stage IV walking post that doesn't mean they DON'T walk. That doesn't mean they DO walk either...
;-)
I just got back for a 2-3 mile hike in the woods with my son. It was great, very marshy, probably ticks too, I got a few nice welts from mosquitoes, poison ivy all around, and I loved every minute of it. I also got out last week and did about 2-3 miles at a nice place in NJ that I used to go mountain biking in years ago. Then the BANNED bikes!!! A sore spot for sure. Horses are still allowed and there's no pooper-scooper law for them. Anyway...I regress.

Sometimes the most obvious things to do are ones that are not done like watching our diet and exercising. I don't think there's a doctor out there who will say that exercise is bad for anyone. Maybe it's and assumption on their part that people are doing it when in fact, most people have to be pushed into it.

Your post reminds me of the one I had made about the TED talk and e-patient Dave and how he is pushing for we, the patients, to be involved with healthcare and be part of the solution.
Here's a link to that post Dave deBronkart: How We Can Help Each Other
Here's a link to the e-Patients site

There's a quote from page 4 of the ePatients White Paper PDF (that can be found on the right side under "e-Patients: How They Can Help Us Heal Healthcare" that reads:
"...[When patients] participate more actively in the process of medical care, we can create a new healthcare system with higher quality services, better outcomes, lower costs, fewer mistakes, and happier, healthier patients. We must make this the new gold standard of healthcare quality and the ultimate goal of all our improvement efforts:
Not better hospitals.
Not better physician practices.
Not more sophisticated electronic medical systems.
Happier, healthier patients.

~ Charles Safran

So, could doctors push the exercise more? You bet!
Can we help more with making the system better? You bet again!
I just wanted to revisit this topic again since you brought up the exercise aspect of this.
All the best
-phil
(keep on truckin')

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i am glad your walking.
e patients is cool, no time to check it out.
just emailed gretta to get this on the front page of csn.

hears to a dream we all share in our hearts, please help, your comments are priceless.

i have praised my doctotrs heaps, but they can also improve, i have challenged mine, has anyone else?

hugs,
pete

Matta's picture
Matta
Posts: 39
Joined: Jun 2011

I had no energy for a long time but then I started walking and my energy grew. After my chemo treatment finished I began to have a bad neuropathy and osteoarthritis so I hold back on my walks. I wish I could find a way to have a life with out all this pain all the time!

Thank you Pete

yoga
Posts: 87
Joined: Feb 2011

Matta,

Sorry to hear that chemo side effects are holding you back. Have you tried rebounding? I was uncertain about the claimed benefits so discussed with my naturopathic doctor and she agreed with my information. . . . I had read that rebounding helps drain the lymphatic system as well as give a good work out - easy to do at home and easy on the body. (You can also get a stabalizer bar to help with balance if necessary.) I found a used one online for $20. To research try googling 'rebounding and cancer'.

Hoping you find new and creative ways to exercise and continue to grow your energy level. Having energy certainly makes this whole thing easier to handle!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hugs,
pete

Matta's picture
Matta
Posts: 39
Joined: Jun 2011

No I have not tried that but it´s a great idea, thank you!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry about the pain, look up our neuropathy posts.
maybe swimming ? we gotta move to live. i hope you find something that works,ask your doctor.

hugs,
pete

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Pete,

I don't have any reason to email, call, write or go visit my oncologist about this subject. I was diagnosed at Stage 1, and I have been reminded at every visit, starting with my first, that exercise is the best defense for me. So I really have no issues with my very fine oncologist about this matter.

*hugs*
Gail

P.S. And it's not his fault that I don't exercise more!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

getting a few nibbles now.

i am so glad you were well advised by your onc, he is a leader i think.

lets see how many other stage 1-3 get this advice, is it pushed really hard.

hugs,
pete

ps come for a walk with me, got time tomorrow ? in spirit of course.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Good stuff Pete, keep it coming. I must also say from a caregivers point of view the exercise helps me stay balanced in the midst of all this. Moving is good for all of us!

Aloha,
Kathleen

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

Hi Pete,

It goes without saying that I exercise. It's always been a HUGE part of my curing protocol. I never post on your walking post b/c my time in here is very limited.

What I want to comment on is your passion. I completely understand the depths of your passion for this issue. I feel the exact same way about diet and crc. To me, it's a no-brainer that we change our diets and take out all the gunk that's killing us. I used to tear my hair out (figuratively) when I'd read all the GARBAGE that folks were eating on here (some braggioso about it) and then we'd wonder (not) why there were experiencing recurrences or not experiencing NED. It made me want to scream. So I had to back off of the boards for quite some time. For my own health I had to disengage because my "passionate" stance wasn't doing me any favors. Everyone chooses her/his own path. Thank goodness there are passionate ones like you to light some fires under some couch potato hinders. ;-)

Just remember, though, that our doctors practice MEDICINE and impart their knowledge in regards to pills and surgeries and diagnostics. They don't study health in the terms you're demanding. I agree with Phil: WE are going to have to demand of THEM our health and make the change in the system....they will have to follow in order to stay competitive. Just think that in the old days doctors actually suggested that smoking was healthy. I kid you not.

So to me, you're singing to the choir....the one who refused chemo....who instead walks/runs/bikes/swims/practices yoga/dances/juices her way to a cancer free life!! :-)
I just don't post on your threads about it b/c I'm too busy out doing it!!!

peace, emily

dasspears
Posts: 233
Joined: Feb 2009

A friend of mine who was diagnosed with Stage I anal cancer a year ago decided to forgo the conventional treatment and pursue alternative treatments at a center in Germany and then at the Gershon clinic. There is a standard protocol for treating anal cancer that is very successful as anal cancer can be cured. A few weeks ago, the CT scan revealed that the cancer had returned and is in her peritoneum and in some lymph nodes. My friend exercised and followed the Gershon diet.

When I was diagnosed, I chose the conventional treatment and I'm 4 years NED. In my opinion, it is about choices. While my friend has now chosen to do chemo and radiation, I do think her system will be stronger since she has been diligent about eating and exercising habits.

Wishing everyone well!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear dasspears,

but before choice is information.

i don't want you friends fate or mine to influence this debate.
actually no one is debating the science, thankgod sigh ahhhhh at last.

just help me get the walking message onto the front page of csn. after csn then the whitehouse. can someone in the usa email obama to go for a 40 minute walk on a treadmill to raise awareness for crc and all cancers. its an innovative way to save a few lives and dollars in the us health budget.

now is the time

"Victory, however long and hard the road may be;
for without victory there is no survival"
-Sir Winston Churchill

i love this.

lets not debate diet, juicing, chemo.

lets agree to walk, talk, and post and smile.

hugs,
pete

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

"Just think that in the old days doctors actually suggested that smoking was healthy. I kid you not."

That is a rather simplistic view of the history here.

The Native Americans saw tobacco as a healing agent, both smoking and using the leaves as a type of poultice to kill pain.

The early Europeans (15th and 16th century) thought tobacco was a cure all, even for curing cancer.

It was not until the 1950's that the link between smoking and cancer became clear, and the cigarette companies spent a fortune making fun of the science, though the advertising promoting the health benefits of smoking predated this discovery.

Why did it take so long? Well, we did not really start smoking cigarettes until WW1, and WW2 just sealed the deal. Give a smoker about 30 to 40 years before lung cancer sets in and you can see the time-lines forming for the science to catch up.

In the 1960's the Surgeon General made the link to cancer official government policy. The Feds also started regulating advertising (anyone watch Mad Men?) and the tobacco companies had to drop their health claims.

I kid you not!

Here are some links for those who are interested:

Brief History of Tobacco

More Doctors Smoke Camels

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

government is a bankrupt dinosaur. why wait for them.
dam how many lives lost for obama to go for a walk around the whitehouse to help save lives.

this recession the world is heading into may have a positive, less work more chance to be healthy and walk.

we know the facts about smoking and walking.

i am going for a walk right now. is my logic about 40min walking buying me an extra 9.12 days ok ?

thanks for joining in on this post. i know we disagree but somethings often but its also why i am keeping this post focused on walking and exercising for maximum survival benefit.

i have asked greta to get the warning on the csn front page, do you or anyone have any contacts at csn to get this idea up as a campaign. after all we are csn.

all i want is a button with WHYEXERCISE? on the front page that goes to the news item.

then the job is done. the message is being constantly publicised, now if its on csn.

all us cancer patients will see it, any slow onc or surgeon will get a question from the patient, "oh i saw on csn about walking"

we can dream, can't we.

hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

your a star in my books.
thanks for the kind words.
science for walking not arguable.
lets win the walking battle first.

maybe then diet, but that is another mount everest.

who wants to climb everest and raise money for crc ?

i do!!!!!!!!!!!!!! anyone else.

just registered umustwalk.com and survival-of-the-fitest.com
cool names. can anyone build websites to get the message across ? pm me ?

no answer from onc or surgeon. alas. but i have hope, i am stubborn.

your example has added to my survival

hugs,
pete

northernlites
Posts: 96
Joined: Jun 2011

Hi Pete,
I have a wonderful Dr.(my surgeon) who is a 12 year colon cancer (stage III) survivor... His words to me the day after my surgery was "I want you up and walking today". He has inspired me in so many ways that I can't explain. He has helped me not only medically but emotionally as well. His story is amazing...I tell him all the time he was sent from heaven to heal me...I am blessed and thank God everyday for one more day.

So yes, I walked again today,it was a beautiful day!

tessa

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

your surgeon is great. i just wish they all were.
i appreciate the good stories as well as the bad.

they say goodnews does not sell, but it certainly raises my spirits.

we loose 53000 yanks each year, that over 1000 a week because stage 1-3 are not walking.

still no reply from my onc or surgeon, still no front page on csn. that life, its just a crying shame.

hugs,

pete

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

how many are already stage 4 at dx?

This reduces your risk of recurrence by 50%. So, if you were stage 1 and your risk of recurrence was 10%, exercise could reduce that risk to 5%

BTW, ACS has lots of links to the benefit of exercise, and a program for employers to get their employees moving.

CSN is about us, and every cancer is a bit different, so a general "everyone" benefits by working out is not quite true, and would be a inappropriate on the CSN home page. Your walking post has been on the front page of the CRC forum since you started it, so I would say that your message is getting to who it needs to get to.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I assumed 1/3 at initial DX were stage 4.
so in the usa 150,000 new cases would be split by exercise benefit.

ie 100,000 stage 1-3 and then 50 stage 4.

even if the ratios reversed that 50,000 stage 1-3 so thats 25,000 lives saved.

only 500 lives saved a week in the USA, we are not even talking UK, Canada, New Zealand or Australia.

I think CSN should tackle the lifestyle exercise issue head on. I think most people after they start caring for their bodies by exercise move to caring for themselves with a healthy diet.

My issue is that our doctors are not willing to tackle lifestyle issues. As far as I understand the facts, I don't have an option, I want to live.

Even if I get stuck with a recurrance I'll be the fitest and strongest of any patient, so they can then hammer me with whatever radiation and chemo is necessary to survive. Every single day I am getting healthier and stronger, if the crc comes back then at least I am not the overweight slob I used to be.

worst case my strength and fitness might just buy me another 6 months with the family, best case a lifetime.

pete

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

that dx is not a death sentence.

"I assumed 1/3 at initial DX were stage 4.
so in the usa 150,000 new cases would be split by exercise benefit.

ie 100,000 stage 1-3 and then 50 stage 4."

Again, not every dx ends in death, actually, for stage 1-3 the odds can be pretty good, and even stage 4 is survivable.

Btw, your numbers are equal to the expected deaths from CRC in 2011, not the number of diagnosed cases.

biz
Posts: 60
Joined: Jul 2011

My onc knew I was working out before I was diagnosed, and he told me to keep it up through chemo. So that's my plan!

Thanks for the encouragement,
Biz

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

It seems some once are pushing exercise.

Hugs,
Pete

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I don't understand your point at all. I'm glad others do. The first post makes absolutely no sense to me whatsoever. What are you asking the oncs to do??
Please re-read your post (first one)and explain what the heck are you talking about? Where is there Sugar in this? Just totally confused.
Winter Marie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi winter,

hope your going well.

sorry i guess its a bit confusing.
I put the sugar in the title because BUCKWIRTH said I needed to sweeten up my message if I wanted to get it across. Now I took it literally I put SUGAR in the title.

I thought the email I sent to my oncologist and colorectal surgeon was clear. I essence another study recommending serious exercise for stage 1-3 crc's means the recurrence risk is reduced by a massive 53%. Now I have been aware of this last year, so few year and it appears around the world are getting this life saving message.

Doctors don't or won't to get into lifesyle issues, to me it appears they prefer to issue pills. even chemo that say gives an extra 15% survival benefit but say leaves you crippled means you cannot walk or exercise so you miss out on exercises benefits.

so few have got the exercise message, I just want some more company in the walking post. Its lonely doing all this walking on my own, but netherless I will.

I asked CSN to put the study on the front page, that request is still being considered.

My surgeon and oncologist have not replied, silence is deafening.

I am looking after myself pretty well, I just wished other would get this life saving message.

hugs,
Pete

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Your saying Onc's should be recommending people get out there and exercise etc? Helping shake the cancer by physical movement? Can't complain there, you are right, they don't really suggest that you do that. I think because a lot of them are your first life line to your cancer and they figure the last thing you want to hear is go exercise, they probably figure you want to hear more about your chemo's, surgeries and staging at that point, however I think that 6 months in they might suggest it by then or even sooner. It's a good idea Pete, when I think about it, my onc, great as he might be, hasn't recommended exercise, and I agree with you that one should be doing it.
Winter Marie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear winter,

we had similar onc talks without the exercise message.

my great onc said radio/chemo then surgery then chemo etc etc we know my treatment plan . same as most stage 1-3.

the onc should give the walking message in the first crc consult. here is a script for 10,000,000 steps. over 6 years. think of all the walking shoes that means.

what do you think about livingshoes.com

if they told me to climb everest to live i'd try.

now all the onc has to say go for a walk, here is your complentary pedometer.

mine cost me $60, its really good. lets see how active you are, where is a your diary with your walks.

oh and walking during this treatment will be good for your mental health each and every day you do it.

winter, this walking message is big, its my legacy, its something csn can achieve together.

like blake said we are csn.

even if we succumb to crc, can you not feel the immense satisfaction deep in your heart that we got this message to each and every oncologist who cares for us on this board.

that still my dream that my friends here will care enough to tell/ask/share/BEG there onc and colorectal surgeon to BEG/IMPLORE crc patient.

think of it ? go back to the first onc meeting. you want to live, what can you do.
their are tests, scan etc etc. but the onc says, we can get you started on the latest life saving research.

he hands you a pedometer and a voucher for a good pair of red walking shoes, the same colour as the blood in the loo. when you see the shoes your reminded about crc.

he writes the script walk 6km straight after this consult and every day for 6 years.
he then arranges scans, test, and chemos.

this is the new treatment plan for onc. it started today!!!!

we can achieve this together, the number of lives to be saved brings tears to my eyes.

goddamit all those families with fathers and mothers rather then memories.

would kerry, rodger, mary, john have made if they had the walking prescription at the start. who knows, but i hope.

this is just to important, but i need help, the message is not getting the publicity it deserves.

hugs,
pete
ps its not the dex anymore

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Ok, so I reactivated my gym membership yesterday and went for 45 minutes. I did some thinking yesterday about all I went through this last year and that I wasn't going to let it be for nothing and just hope the cancer doesn't come back. I did my treatment, so now it's time to continue "treatment"... care for my body nutritionally, physically, emotionally....and I will appreciate any advice, knowledge, suggestions....anything as this will be different way of living to me. In the past I did get my exercise, and I did eat pretty healthy, but not with the motive I have now. So please throw your knowledge, links, studies, books, suggestions my way :) :)

peacelove&happiness to you all, gail

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

its only 53% but i hope we are still here posting in another 10,000,000 steps.
that about 6 years. see blakes sweet exerise post.

love,
hugs,
pete

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

"Is this to much for CSN ? [ the concept of patient being assertive in the medical system]"

CSN is about the patient being assertive. This is a place where we can raise questions about our doctors decisions, and seek advice on what questions to ask our doctors.

Consider this, there are about 200 different types of cancer. If you think of cancer as fruit, and fruit is as different as apples, bananas and cucumbers, then you begin to understand that the various types of cancer can be as different as those three fruits. CSN has forums for about 23 direct cancers, and a couple of forums that cover multiple types, like the childrens cancer forum, or the other rare cancers forum.

The review we are discussing here shows a survival benefit for only three (Breast, Colon and Prostate), though it does discuss quality of life issues for several others. It also has a full page of warnings about circumstances where physical activity may not be appropriate.

"I think CSN should tackle the lifestyle exercise issue head on."

This is the beauty of CSN: It is about what you think because YOU are CSN! Your walking thread has been on the front page since you started it, and this message has 41 responses. Not everyone who reads a thread responds, Colon Talk shows both the number of responses and the number of times a thread has been viewed, and there is one near the top of their page right now with eight responses and 350 views!

If you want the owners of CSN to be proactive, well, you need to go to the mother site: cancer.org (The American Cancer Society). You will find they agree with you, and even have programs to get employers involved in increasing physical activity.

"Who wants to bet if they print it and post it in the office ? [will my doctors support my idea]"

The source document is 15 pages long, a bit much for the average bulletin board. The other issue is that many (possibly most) Oncologist offices do not have a bulletin board.

"does anyone think emailing this to your doctor is to pushy ? [no one answered this so far]"

Any way of sharing the source document with your doctor is a good one. Consider though that your doctor, like many professionals, recieves a signifigant amount of email, and it is likely that he will never read the review he gets from a professional medical journal, let alone the one he gets from a patient. (I will share a couple of ways to effectively share with your doctor in a bit)

"maybe we should just print it ourselves, laminate it and then go and post in the doctors
offices our selves. Oh that way to militant."

Not too militant, if there is a place for you to do this. If you just pin something to a random wall I expect it will be taken down as soon as you leave. In the end, this is not the most effective way of spreading a message.

So, how to raise our doctors awareness, and maybe get them involved with their other patients who could benefit? Here is a short list of things that will work:

  1. Share the article and/or source document with your physician on your next visit (source documents are always better than articles, even if it is just an abstract)
  2. Based on this review, request a prescription for physical therapy (by writing a script, your doctor is taking an active role, and it is something he can now offer the next patient). 
  3. Request script for a treadmill, gym membership or other appropriate exercise device, then use the source document to request that your insurance company pay for it
  4. Share the article with your infusion nurse, so she can share it with others who may benefit
  5. Start a walking thread in your favorite cancer forum.   Who knows who might be influenced


I posted it earlier, but here is the link for the source document again:

The importance of physical activity for people living with and beyond cancer: A concise evidence review

This is about as easy to read as they come, and perfect to share with your medical team.

Btw, if your treatment has ended and you are in remission it is not too late to request script. Based on this review you should be eligible for PT and you can make a case that your insurance company should fund your Family Fitness membership.

Good luck, and good health to all.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear blake,

what we have in common far exceeds our differences ? i think and hope
my focus is walking, lets together unleash the power of csn.

we are not cancer victims waiting to die, we are cancer warriors living today.

could you tell that the walking post has gotten me of my couch and moving. often pepe has pushed and motivated me. and now here we are. just too many dieing from crc and not enough walking.

gail, point is`great, we go thorough a year of hell. oh hello and then we don't walk.

its like asking to join the stage4 club. i am trying to decline the invitation.
i don't want to get that letter in the mail.

i agree with you and thank you again for the time and effort and care in your answers.
i will follow the key points.

my health insurer HCF has been great, i will post the email to them. i will ask my onc for physical therapy.

the issue here is, we got the power of the people. a small and expensive / costly group of health consumers. this battle is easy, and i could see obama walking around the whitehouse in a pair of red shoes. i can see it.

i am on the i survived us tv show, if i get t he opportunity i will tell this message.

of course if we get this rolling. if anyone does something positive to get the message out share it here.

yes only 3 cancer types, but they cover a large number of patients.

hugs,
pete

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