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young Survivors Conference....I'm Baaaaackk!

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Ronda View Drop Down
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    Posted: Feb 25 2008 at 9:31am
Hello Ladies,     I'm exhausted from hanging out with the "Young Survivor" party animals in Jacksonville Florida.  I made alot of great conacts and we should see some new members showing up soon.  As I dig through my literature I will be posting new topics with helpful information and resources for you all to tap into, but first I have to get my sh%t together!   I have to say the conference really gave me a paradigm shift in the realities of breast cancer.  We here at this sight focus on the triple negative aspect of our tumors, which isn't a bad thing, but there really is much worse out there.  Bottom line is no matter how you type it....BREAST CANCER SUCKS!  It just doesn't stand to reason that a woman dealing with mets who has "the good kind" of cancer is in a different boat than we are.  We're all in the same boat and it's a big "f"ing boat!  The cool thing is I met long time triple negative survivors and in general left with an amazing sense of hope for all of us and the changes that will be facilitated through the combining efforts of many foundations/coalitions made up of BRILLIANT, DETERMINED woman who are making it happen. 
     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 
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 9:57am
I am glad you are back home safe and sound...
 
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
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 9:59am
Welcome back Ronda!  I'm looking forward to reading about some of the topics you have to share from the conference. 
 
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.
Skippy in Austin

Dx July 2007
IDC, Stage II?
Triple Neg
BRCA 1/2 Neg
A/C August - October 2007
Taxol October - December 2007
Lumpectomy Jan/Feb - 2008
node negative
Finished rads April 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote efisher Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 12:15pm
Thanks for the update!  I would too love to see a thread on low-fat diets, fitness, and recipes.
Vitamin D research would be great too.  Everywhere I read states how important it is, so for Komen to do a study on would be a big step.  Please keep us posted and let us know if there is anything we can do to help.
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Ronda View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 1:24pm
Hi Again!
     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 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.
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 3:00pm

Thank you so much Ronda...

 
20% ---- wow that sounds really low... I definitely will need your calculations (I definitely do not see Ben&Jerry's in this equation)!
 
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2008 at 5:17pm

O.K., here's the nutrition stuff.  This is from Faith Ottery MD.  PhD (in nutrition), FACN 

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
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2008 at 2:18am
Oh Ronda it's so nice to have you back and to hear what you have learned. 
I wonder why Oregon and Washington were named as the highest
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.Hug
 
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.Big%20smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2008 at 6:12am
Wow Ronda, your enthusiasm for lowfat and walking (ugh) is catching Clap and I agree with Pam, what a good reporter you are !  Thanks for going and for sharing all this good info.
 
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 Thumbs%20Up.
 
 Thanks again,
Jessie 
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote efisher Quote  Post ReplyReply Direct Link To This Post Posted: Feb 26 2008 at 6:19am
Thanks for the great information Ronda!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 9:42am
Hey Ronda!
 
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
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Wow, Rhonda!!! It sounds like you got a lot out of your trip.  We are so happy that you were able to go.  Your reporting is great. 
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marathonmom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 11:38am
Hi ladies and Rhonda thanx for the info.
Have not been on line for a while. As you gals might remember, I have been dx with brain, liver and lung mets in November and dealing with this stuff since.
I am doing OK. Finished WBR in December (that was HELL) and feeling better now.
Started Xeloda to slow everything down a little but I know outcome is not great.
I am taking it one day at a time and living life to the fullest.
My husband took 6 months off from work so we can spend quality time as a family.

Will be going to an integrative center on Friday to look into an alternative treatment regime....will see what comes out of it.

My question to Rhonda: have you met any triple negs with mets that have
 been around for a while? Does not seem to happen but there is always hope.

Thanx,

Oana
dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads

Oct 2007 mets to lungs and brain
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 12:09pm
Hi Oana,   I'm soooo glad to hear from you!   There was a guy named Keith I. Block MD.  MPH.  from the Block center for Integrative Cancer Treatment out of Chichago.  He treats women from everywhere.  If you can get to him even for a consult and follow-up with phone conferences I think he's the real deal.  They had him as a keynote speaker for the entire conference.  He showed several women with mets that are still around.  I'm not sure if they were triple negs or not.  The other thing, regarding long time suvivors with mets, there were women at the conference, but it seems many simply don't differentiate the tumor type.  The common thread is they were young at the time of diagnosis.  I was also struck by how many woman were diagnosed during pregnancy or shortly after giving birth.   One gal who was only 23 felt it was from the Depo shots and patches she took for birth control from the age of 15. 
     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??
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marathonmom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 12:20pm
Thanx Rhonda!
WBR: whole brain  radiation.

About hope: that's what keeps me going....we are not statistics but real women.

dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads

Oct 2007 mets to lungs and brain
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 12:37pm
Oana I have been thinking about you for so long and knew you weren't posting so worried about how you were doing.  It is wonderful to hear from you.
 
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.Hug
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunbearz Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 5:12pm
 Glad you made it Rhonda.Smile!! Well here I am going on 11years.Cancer sucks, But im glad Im triple neg.For Stage iv there are a lot of drugs for us.The side effects arent that bad. And we do have the nutrition that does help us.
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
Dx 1998 mast.Bone mets 2003
ac/xeloda,zometa,taxotere,,doxcil,rads to hip
triple neg brca-gemsar
Abraxine
2008 -gemsar/taxol combo
Taxotere ,Ixempra,liver, lung
Mets
Testosterone
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2008 at 7:00pm
 
 
 
 
This site has all the latest information.
 
 
Connie
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2008 at 5:18am
Good Morning All,
     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. Wacko
     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
DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 29 2008 at 10:57pm
Ronda,  just found this thread about your trip. Thanks for all the info especially the diet/fat calculations.
 
Kirby
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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