One observation is you can not confront the realities of breast cancer without confronting the realities of our toxic environment.  It may be that this issue will be the fuel that forces our industries to find better ways of production that doesn't kill it's consumers in all countries.  We all need to be aware of the simple changes we can make in our lives to minimze toxicities in our homes, our bodies and our communities.  I will be asking the site to create a thread for this topic.

     With regards to triple negatives, I can't say I discovered anything new and exciting specifically for us, but the reality of walking and consuming a lowfat diet was really driven home at the conference.  Honestly we've been given a gift that diet can make a big difference for us and the only side effects are that we get healthier.  The gals who get the other therapies can't say that, the other therapies can have serious, life changing side effects where as we just need to minimize our fat intake. It's a good thing.  I will be asking the site to create a thread dedicated to lowfat lifestyle, fitness and recipes.

     There is some research out there that will benefit all tumors if they can accomplish what they're trying to do, and that is to figure out how to cut off the blood/nutrition supply to the tumors through other types of receptors.  That research looks promising. 

     I will be approaching the Komen foundation to fund a study on vitamin D.  There were other women at the conference who were aware of this...but not many.  Oregon and Washington were just named for having the highest new breast cancer rates in the U.S.  I'm sure Canada is not far behind.  I have contacts here and may be able to facilitate that study at one of the colleges up here.  It may be one key to prevention and longevity for survivors.

     There is soooo much to talk about, but right now I'm pooped and need a nap.  I'll post more later about some of the other cool stuff I learned.

 

Night night,  Ronda 

 

I am waiting on an appointment with a registered dietitian for a low-fat diet/very low sugar/high in plant protein plan for the triple negatives to follow.

 

I have all the cookbooks but I wanted to know in simple terms exactly what amount of fat we can eat per day - in common food terms! How many pieces of chocolate (it is antioxidant - if it is extra dark- can cure almost everything from depression to a broken heart), how much fresh ground peanut butter can we eat?

 

I do not have any weight to lose but I figured I should be considered priority just like diabetics and heart disease patients.

 

I will let you know when I get an appointment. I won't be hold ing my breath (in the Canadian healthcare system - we could die very quickly each time we held our breath waiting for a medical appointment!)

 

Love,

Connie

 

 

I would also like to see a thread dedicated to lowfat lifestyle, fitness, and recipes. 

 

Tell more about some of the long-term triple negative survivors you met.

     I've had my nap and am ready to jump in again and give you some more tid bits on the conference.  First thing is that the Young Survival Coalition filmed ALL of the classes and will be web casting them from their site so all of you can pick and choose your topics and watch.  One class that I took was on weight management where the doctor/phd/surgeon  gave you simple mathematical formulas for fat, calorie, and water intake.  Body fat is an issue for all women because it increases estrogen in the system, getting it off is important. I'll post more details on this lecture later. 

     There was also a an MD/Naturopath who gave a brilliant lecture on lifestyle choices and included good fats vs. bad fats etc.  He also sited some integrative medicine studies with amazing results that can not be ignored.  Not only does integrative medicine add longevity to the fight it also improves quality of life.  His presentaion should be on the site as well.

     The forum on Triple negative was disappointing in that we were showed a bunch of studies that didn't work, the WINS study regarding diet was not mentioned until I mentioned it (it was mentioned in other presentaions, just not the class for triple negative...go figure), but there was a girl who was diagnosed at 16 who was now 28, no mets! I met a gorgeous triple negative who had survived it by 8 years, no mets, she was some kind of reporter.  I met a volunteer that was 5 years out, no mets.  The keynote speaker in the closing cermonies was a BRCA1 whos family was studied and instrumental in discovering the BRCA 1 gene.  She's survived it by decades, no mets.   It was really really stressed that we triples do get as much benefit from chemo as the others get from the chemo with Tamoxifen and Herceptin, but in addition get added benefit with diet!!  Not a bad deal at all. 

     I also took a cool excercise class called the Lebed method for lymphedema and the prevention of lymphedema.  I don't have lymphdema, and am not likely to develope it , but I bought the video anyway because it also helps with depression, range of motion, muscle strengthening, balance and can be done sitting or standing, plus it was fun.  The site for this video is mailto:info@lebedmetho.com - info@lebedmetho.com

     I also want to post info for other resources, but I've got to get dressed and go to the bank first....so I'll write more later. 

 

Toodles,

 

Ronda

 

P.S. Connie you want you fat intake to be 20% of your total calorie intake.  Your calorie intake is calculated by your ideal weight.  I will check out my info and post the calculations later today.  But a quick way is to look on the labels of the food you're about to eat.  They will say calories per serving 100   Calories from fat 40%.  It's usually found one line above the nutrition chart.  You might have a low calorie food with 50% of the calories from fat!!  So that gives you a bit of a head start.

 

20% ---- wow that sounds really low... I definitely will need your calculations (I definitely do not see Ben&Jerry's in this equation)!

 

 

Connie

Ideal body weight  (IBW) for women.

     100 lbs for 5 ft plus 5 lbs for each inch over 5 ft. plus or minus 10%

     So a woman who is 5'4" ideally should weigh 108-132 lbs.

 

Protein intake should be 0.5 g of IBW

     So a woman who's ideal body weigh is 120lbs should eat 60 grams of    protein a day.

  Calories

      Overweight=current X 13

      Disireable weight= current weight X 15-16

      Underweight= current weight X 18

 

Fat intake is 20% or take your total calories x 2 then drop the zeros at the end.  The types of fats are extremely important when it comes to cancer issues.

 

She also suggested working your way up to 25 grams of fiber per day which can include what you eat with fruits and vegetables.

 

I highly recommend watching her presentaion when it's up and running at the Young Survival Coalition.  There is also books you can get that will tell you calorie, fat info on just about everything.  I will also see if I can find a site that has a calculator.

 

Ronda

 

Ronda

breast cancer rate?  You mention sometime it is grey and dreay, wonder if there isn't enough sun for one thing, interesting.

 

Sounds like you had a great time and you have been a super reporter.

 

I have a bright red t-shirt that says Cancer Sucks right in the middle of it.  I don't usually wear alot of red but I won't people to see this message.

 

I'm expecially looking forward to the information on the fat types and suggested amts --- and to the good recipes we can share.  Some of us are also heart patients.  It's really handy that our 2 chronic issues have a common treatment -- lowfat, fiber, and exercise .

 

 Thanks again,

Jessie 

 

So glad to hear you are back and that you had a great time!  I have read all the info you posted--and thanks so much!  I am interested in contributing my "ph miracle" recipes as well since they are about 20% fat.  Ladies, if you look at your plate--it should be roughly 80% greens mostly raw or crispy veggies, and the rest 20% can be fish or chicken--right kind of fats...no red meat!  There are ways to modify this as we humans are soooo creative!!   

 

Great job Ronda!! 

Take care,

Liliana

 

By the way, we love the idea of a low-fat diet, fitness & recipes thread.  We are currently in the process of re-vamping the entire website.  There is so much that we want to do with it.  We will be sure to include this new thread.  Also, one of our initiatives on the new websites is an "Ask the Expert" section, which will include an "Ask the Nutritionist" feature.  We have a great nutritionist all set to start taking questions.  We are very excited to get the new site up and running. 

 

We would be interested in hearing any other suggestions that any of you may have for the new site.  We want to make the site as useful, and userfriendly as possible.

 

Thanks.

Allison

     Oana there is always hope so keep on searching, fighting  and remember we're all friends here and we're in this together. 

 

Ronda

 

P.S. What is WBR??

 

How wonderful that your husband took time off from work so that you could have quality time, what a good guy.

 

Blessings and hoping you are well soon.

If you want to read nightmares, the Susan G Komen site is full of HER, PR,

ER positive women being ripped apart with operations and horrible side effects from Chemo, they have to take.

 No thanks, Ill stay where Im at.My Dr even said if she had BC she would rather be in our shoes.

 So glad to share your excitement and knowledge.

   Jill

 

 

 

www.brainmetsbc.org

 

This site has all the latest information.

 

 

Connie

 

     We've had about 10 days of sunshine here in Portland Oregon area, just enough to coax up the early spring blooms and give us hope after a long ass winter, the WHAM! I know we're going to freeze again!  Not today but soon.

     Oana,  how do you feel after your treatment?  I haven't heard of it WBR before, but it sounds horrible.  I was reading an article in MAMM magazine, a womens cancer magazine, that was in my oncs office, and they were quoting Dr. Block from The Integrative Medicine Cancer Institute.  He nationally recognized and does all kinds of stuff with blood work and getting cetain markers in line.  There was a gal with mets who used him and wrote a book about...she's, I think,  nine years out of mets.  I bought her book  "Letters to Sydney" .  I haven't read it yet so I'm not sure about the content.  If you PM me with your address I'd be happy to send it to you and you can review it for us.

     So I was in my oncs office paranoid about a swollen lymph node (I'm pretty sure it 's from flying and a head cold) and I'm reading MAMM magazine reading the article "Mind over Cancer"  and it talked about the Spiegel study that showed women lived longer if they joined group therapy or went to counseling.  When they tried to duplicate the study 20 years later they couldn't.  They think it's because they are living longer anyway due to new treatments.  BUT in the new study they did find women who were ER- and went to group or counseling lived longer than those who didn't about 21 months longer on average.  So, see, talking to you gals is extending my life ;)  .  I also see a counselor too, to maximize the benefit, plus it helps when life pisses me off or I need a different perspective on my plight! 

     I'm going to work on getting those new threads started, I still need to go through my bags of conference stuff.  So I'll post more later.

  

Ronda

 

Kirby

 

I am excited about the new nutrition, diet etc thread. I am also glad that my onc made a mistake when he said 20 grams of fat.

 

I am so glad you got to go to the conference,  your reports have been excellent!  Thank you so much.

 

Saw my oncologist yesterday for a first follow-up after last day of chemo (12/26) and surgery (1/25 & 2/12.)  He said he would see me again in 4 months.  I asked him, "What is the best thing I could do for myself at this time?"  Diet, exercise, immune system, supplements, other alternative therapies, etc.?  He told me not to gain any weight and to exercise! He explained to me that there was enough substantial evidence in the cancer medical community (I know, there are differences of opinions...) to support rationale for triple negatives to defend themselves from reoccurences by eating a low-fat diet, exercising, etc.  Interestingly, he added that telling me to not gain any weight was like telling a lung cancer survivor to stop smoking!  This gives me some hope and restores my sense of control.

 

Please don't be offended by the weight remark.  My doctor is wonderful, kind, caring, and a very good listener.  He knew how to treat me right from the start!  In case you were wondering, I'm 5'6" and weight 135lbs.  Even for me, weight gain can be dangerous.  Very interesting. I will however continue to follow the advice of my nutritional oncologist and through diet, supplements, and exercise work on building my immune system. 

 

I began this journey on August 15th by starting chemotherapy.  Today I'm one week into radiation after lumpectomy.  I had 75% shrinkage of my triple negative tumor (according to lump. pathology report) from chemotherapy.  I now have to fight any residual, rogue cancer cells that managed to escape into my system.  My plan right now is to take my supplements every day (can't hurt) eat a low-fat diet rich in veggies and fruits, and exercise everyday by at minimum walking 30 minutes. 

 

Two great reads:  "After Cancer Treatment" by Julie Silver, and "Beating Cancer with Nutrition" by Patrick Quillin.

 

By the way, Ronda, I love what you have shared from the conference!  Thank you. 

 

 

    Skippy you sound like you're doing sooo good, I know I get pretty sarcastic sometimes times (morbid too) but I'm glad you're still hanging out with us!!

    

     On a different note, I didn't get to critique the Young Survival Conference BUT I plan on pitching them a bit of sh%t because the food that was catered by the hotel was large volumes of fat (cheese), processed white flour, soda pop and generally crap.  What a mixed message it sends to have all of these educational classes of nutrition and the feed us that.  I have no will power either and ate too much cheese.  I think that's why I caught this cold.  There is so much out there that pushes us to make unhealthy choices, we really need to re-inforce this in one another.  I just simply don't buy  the crap, thus I make my whole family support me !

     I did PM admin for those new threads.

 

Later,

 

Ronda

 

 

I will keep everyone posted.

 

This might be trickier than I thought Ronda - Some how shrimp was under the column for LIMIT - egg yolks, nuts and seeds, shrimp.

 

The AVOID list looks like an inventory of my cupboards! So much for considering Lay's Chips as one serving of vegetables.

 

Love,

 

Connie

 

 

     We'll all start finding cool tricks, short cuts and compromises to share with eachother.  One thing is Nonfat/lowfat yougurt in place of sour cream for dressings and dips...you can't tell.  Also I just discovered Ben & Jerrys Low fat Cherry Garcia...it's mine mine mine!  I just eat a bite at a time when I need a bit of a sugar fix.  I think I should also point out there are alot of nasty low fat foods out there that are loaded with chemicals...but are low fat.  I tried to take that route before and ended up with hives from some nasty additive.  If we can figure this out using whole, good foods I think all will benefit.   Give us the scoop on what your dietician says.  Let him/her know about the WINS study.

 

Ronda

Two things for you to discover....Chunky Monkey and Carmel Sutra - by Ben&Jerry. (These should be reserved for extreme stress).....

 

 

I got red splotches from additives too.....

 

I will keep you posted on the dietitian's suggestions.

 

Connie

 

I've got a good one...during chemotherapy one day in December, a volunteer passed around a plate of sweet cookies, pastries, brownies, etc. to all of the patients in the infusion room.  Bless those volunteers and all that they do, but come on!  Sugar is the devil! 

 

With that being said...my nutritionist did advise me to carb-starve my cells the day before chemo, and then when infusion began to carb-load by snacking on Goldfish, dates, raisins, or other high-glycemic foods.  This, he explained, increased cancer cell glucogen (?) uptake and would feed very hungry cancer cells a hefty dose of toxic A/C or Taxol.  This is the same reason that we are asked to not eat before scans and then are shot up with glucogen(?) isotopes to find evidence of cancer cells that are devouring the glucose.  (I'll do my homework on this topic later as I'm not articulating very well.)

 

Ben and Jerry and ice cream fans...I can't live without Breyers Low-carb fudge bars.  They are sweetened with Splenda, are 100 calories, 3g sugar, and 9 carbs.  I role the fudge bar in chopped walnuts! 

 

How about a new topic devoted to threads relating to living beyond treatment?  There we can post ideas and get support relating to diet, exercise, mood, etc.  I've really been battling a bit of anxiety lately!

 

Skippy,  That totally makes sense about carb starving the cancer!  See, it's information like this that will make our doctors evolve.  Of course they'd like us to stay off the internet, because that's how we discover the latest things THEY should know about!  I'd like to develope a hand out out for the do-gooders that gives healthy food suggestions.  I happened to sit next to the PhD nutritonist at the airport for an hour and we talked about this very issue.  She said the oncs don't like to restrict diet during chemo because the women are going through so much, she said that's like letting a smoker continue to smoke during lung cancer treatment.  If the oncs don't push it, who will??  WE WILL!!! Maybe they'll get it someday.    FYI  There's site on Splenda  http://www.splendaexposed.com - www.splendaexposed.com   I use to use Splenda prior to BC and was having kidney problems, someone told me about this site and low and behold when I quit using splenda my symptoms went away and never came back.  There is another alternative sweetner called stevia, it's derived from a plant, and is low carb/calorie. I thought Splenda was the greatest until I discovered it's closer to chlorine than sugar! (Now Splenda!!! Will our suffering ever end!?!)

 

Ronda