where is the respect in the sugar discussion

smokeyjoe said:

WOW!!!   I've been doing a

WOW!!!   I've been doing a bit of travelling and haven't been able to read this board much lately....obviously I missed something......

If you've seen one you've seen them all. You really didn't miss anything.

Different cast, same old story

Pete,

I follow with interest what you are doing but here on the other side of the world, I have been very fortunate with the traditional treatments I've received. You see, I was diagnosed Stage IV out-of-the gate in December 2011 at age 47. I had a lung nodule involvement.

First I had surgery for the lung met via VATS, then progressed to 6 infusions of Folflox. Next, I embarked on 28 daily radiation and chemotherapy treatments that produced a complete response to my large rectal tumor. I had a resection in September 2012 to remove the scar tissue where the tumor was initially located and received a temporary ileostomy. Next followed by 12 infusions of Folfiri. My Ileostomy was reversed in July 2012, 10 months after my resection.

The good news is all scans and tests show NED since my complete response to Chemo/radiation. Just last week, I had a colonoscopy and re-scan (having been PET Scanned every three months since surgery) to monitor my condition. I am very fortunate to retain an NED status and my oncologist has now moved me to follow-up at 6 month intervals. All treatment was received at a large national cancer institute hospital.

My point is everyone is different. Traditional medicine works on many and some are not as fortunate. Cancer is a mean disease with no simple answer. If it were, there would be a one-size fits all cure. I personally feel cancer is very individualized. I eat sugar and have what you call a "sweet tooth", exercise moderately, and have a high stress job.

While you are spending hundreds of thousands of dollars on new treatments, your patron physicians are certainly interested in you. Both because of the money you are spending on their services and providing a means to test their treatment approaches. If you were not spending the money- would their interest be there?  While my traditional treatment has cost my insurance hundreds of thousands of dollars as well, the traditional approach has provided success to many- even Stage IV folks like me.

My advice to you is do what makes you happy. You have to follow your heart to be at peace with your decisions. For me, I could never leave my children, family, and life to embark on what you are doing. I would rather have potentially limited time than to be absent and missing precious time with my children. Likewise, I would worry about preserving assets for my children. That's where we are different; however, please do not view that as criticism. 

Your choice is yours and I respect the differences we all maintain.  We are stamped with an unknown expiration date and we all must follow our own path in life. Time marches on for all of us, no matter if we have cancer or not. I wish the best to you my friend, I enjoy reading your posts, and request you likewise not condem the treatment decisions and circumstances of our peers.    

tachilders said:

For those of us who do not

For those of us who do not respond as well to traditional therapy, it is encouraging to hear about alternatives that might work for us.  I was diagnosed stage 4 in June 2012, and have mets all over (lung, LN, liver, peritoneum).  They attempted resection of my primary tumor, but it had grown out of the colon and was too entangled with other important stuff to remove, so they gave me a colostomy to alleviate the blockage and sewed me back up.  I was then told my only option was chemo, and I would likely be doing that for the rest of my life.  I did 12 tx of FOLFOX + 10 avastin treatments, and got shrinkage but not a single tumor disappeared completely.  For the past 5 tx, I have been doing just 5FU + avastin ("maintenance chemo"), and had a CT scan after the 4th tx.  Results of that were no additional shrinkage anywhere, and maybe some slight progression in some areas.  As you can tell, standard chemo is not working very well for me.  The next option is FOLFIRI + avastin, but I am thinking instead to try to follow Pete's example and give the German clinic a shot.  I will only be going for 3 weeks initially, and then will see how the treatment works before deciding what to do next.  Unfortunately, I don't think FOLFIRI + avastin is going to be much more effectie than FOLFOX, so I need an alternative.  It won't be cheap, but if it buys me more time it may well be worth it.  I would never dare tell anyone else what to do, but for some of us, the traditional route doesn't look very promising.  The crazy thing is that I tolerated the chemo well, and generally feel very good 95% of the time, but the cancer inside me is not going away like it does in some people.

Tedd  

I am in the same boat, and traditional medicine has little left to offer me. Its been just 5 months since my initial diagnosis and neither first line folfox, or second line folfiri managed to shrink my extensive mets.It just happens that my specific mutation resulted in very efficient mechanism which enables my little mutants to pump the chemo drugs out of the cells before they can do much damage. The result is multi-drug resistance.

I am now looking at the metabolism pathway and I think this has a lot of merit. Glucose, glucogenesis, thyroid manipulation, metformin, dca are all on my hit list.

joemetz said:

JoeMetz.... my two cents

I don't mind the debate, but the personal attacks... it's hard for me to read, so I usually just bypass that, and get lost in the other stuff.

It is really cool to see the people who get tied up in the CSN battles, are passionate and also have been around awhile. So, there's something to be said for each person who not only challenges each other here, but I assume we also challenge our doctors because of something we've learned here.

For me the diet thing has been very difficult, as the first six months of chemo... I didn't want food and the last six months I WANTED food badly. And, most of the food i craved was starchy foods.  I haven't bought in on the strict diet or juicing... but I enjoy everyones thoughts and opinions.

My attitude has been "Hell, I already have cancer, and they're pouring in the chemo... what's wrong with a big baked patatoe?... What is this gonna kill me?"

In the past two weeks, I have challenged my doctors more than any other patient I think they've had. But, if I didn't have this CSN blog... and feel the passion of each one of you and your desire for knowlege and your desire to push for something new... well, I wouldn't be in a good space right now.

there have been times when my wife will say "why do you spend so much time on that site? It seems to really get you worked up"

I have met good people, only to learn that they die in the end.

I have heard of the typical "by the book" proceedures and I've learned about stuff that no one in my medical team would ever dream of telling me about.

I don't offer a lot of input or posts lately, as I am back to work now and pretty drilled down and focused on our business. But, trust me when I say that i never stop lerking, learning and soaking it all in.

But I can say... the thick arguements and battles... I skim over that stuff and try to get to the meat of the questions.

So, i encourage the challenges and the crazy ideas and different opions and methods to treat this battle. But, the personal attacks... I don't step in cuz you're all big kids and people who like to fight... well, they just like to fight.

I've over all this and hopefully the sharing of new, crazy or your passion for what you believe it doesn't stop.

Most people thought Steve Jobs, Albert Einstien, Thomas Edison, Ben Franklin and any others who didn't go mainstream... most people thought they were crazy wack-jobs.  But, in the end... they were right.  There were many others who had crazy ideas or beleived in something different who were not successful as they were wrong. But who's to decide who's wrong or right.

my two cents.

Hugs to my CSN fam.

Keep up the fight.

JoeMetz

 

I've been dealing with cancer on and off now for over 8 years, was dx with stage 4 in 2004. In all this time, I've never changed my diet, granted I eat well, I've never said no to anything. Good food helps me cope with the bullsh1t cancer brings. Nothing beats sharing a chocolate malt with your 10 year old:)  Both my parents had CRC, my mother died of this disease at the age of 69, and my father beat this disease, he was 57 when dx'd, and he died when he was 82. He almost died one year to the day of my mother, I believe he died of a broken heart:(  Someone in my family was destined to get this disease. I grew up in a large family with 5 brothers and 2 sisters, none of which have the disease, because of my illness they are more aware of CRC, they all were tested and routinely get colonoscopies. I've always took care of myself, I've always been in good shape, I don't smoke, unless I'm on fire:), I may have 1 or 2 drinks a week and I exercise routinely, but yet I got this disease!  I was the one-eight. Funny how things work out, I think I was the best prepared to deal with this disease.

As far as Pete is concerned, I'll read some of his material, but I mostly gloss over it. It's not my cup of tea. I don't have a problem with him posting his thoughts or methods, I take them with a grain a salt. But if it helps Pete, if it makes him feel better, let him post as much as he wants.  I liken this to Howard Stern the famous shock-jock, some love'm, some hate'm. If you don't like his message, don't tune the dial to his station. If you don't like Pete's message, don't read his post.

My goodness, I hope my quesiton regarding the protein drinks & sugar didn't play a part in getting all this started! I sure hope not. All I wanted to know is how all of you feel about cutting sugar out of your diet (or my husbands, in my case). And what kinds of protein drinks you recommend. I talked to my nieces husband who is a medical researcher who has done cancer research & this is the way he explained it to me (*NOTE-I am NOT in any way, shape or form trying to give anyone advice on what to do or not to do, I'm simply relaying what I was told.....) He explained it like this....He said that cancer cells DO feed on sugar (the "glucose" already in our bodies....) but to say that eliminating sugar from our diet will kill cancer cells just isn't so. He said basically the long & short of it is this....cancer cells WILL get what they need to survive, regardless of whether we take in sugar through our diet or not. He said that the cancer cells will get what they need, regardless, so we need to eat whatever we need to eat to stay alive. (he didn't use those exact words, but that's what he meant) He also said that yes, it would be in the best interest of EVERYONE (not only cancer patients) to exclude simple sugars from our diets, like sodas, & junk food, but to do so will not help or hurt the fact that there are cancer cells in your body....) He said that everyone needs to be eating a well balanced diet of lean protein, fresh vegetables & fruits & getting the daily allowances of vitamins & minerals. I'm sorry if this isn't "scientific" enough, but it was explained to me in a way that I understood, & it made total sense to me. I hope it helps you all too. And PLEASE, for goodness sake, everyone just GET ALONG! Everyone has opinions & ways of trying to deal with this devastating disease, so be it....deal with it the way you want to, but please don't try to shove things down others throats. OR, here's an idea.....if you don't think you're gonna like what you're about to read, don't read it. It's that simple. Thanks to everyone for the advice on the protein drinks & the sugar....I apprecitate all of your help! (((HUGS)))) Kris OH! I almost forgot....Jason is doing VERY well! His next (second) treatment is this upcoming Wednesday, the only bad side effect he has has is the mouth sores, but he got the magic mouthwash & they are much better than they were....I just hope he continues doing so well, & the side effects don't get worse the more treatments he has, but I'm afraid they will.....=(