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mrsmurphy View Drop Down
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    Posted: Nov 18 2009 at 5:12am
Hi, Im new to this forum!  I have had quite a year.  But lately, because I NEED to beat this, I have been doing major research on diet and nutrition.  Just about all of my research is linked to estrogen and fat and breast cancer.  Well, we all know with triple neg we dont have the estrogen factor to work on, has anyone found any good info on diet that specifically helps with triple neg breast cancer?
 
Glad to be here, Praise God I finally found this!
 
33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July!
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Terje View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2009 at 8:02am
There's a lot of talk about vitamin D.

Vitamin D and BC...once again!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HolliBeri Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2009 at 10:47am

Docs at Roswell Cancer Institute have been doing studies on Vitamin D deficiency in cancers for some time now. Interestingly, the doc that was speaking (who is the CEO of Roswell) said that they've found a very high incidence of Vitamin D definiciency in women with triple negative breast cancer. They said that the amount of Vitamin D supplementation needed to bring levels up to normal are much higher than what is in your basic supplement. You would need to be supplemented under the supervision of your physician and have regular blood tests to monitor your levels.

From the Vit D council: Technically not a "vitamin," vitamin D is in a class by itself. Its metabolic product, calcitriol, is actually a secosteroid hormone that targets over 2000 genes (about 10% of the human genome) in the human body. Current research has implicated vitamin D deficiency as a major factor in the pathology of at least 17 varieties of cancer as well as heart disease, stroke, hypertension, autoimmune diseases, diabetes, depression, chronic pain, osteoarthritis, osteoporosis, muscle weakness, muscle wasting, birth defects, periodontal disease, and more. Vitamin D's influence on key biological functions vital to one's health and well-being mandates that vitamin D no longer be ignored by the health care industry nor by individuals striving to achieve and maintain a greater state of health.   http://www.vitamindcouncil.org

My doc said taking liquid Vit D and calcium absorbs better than pill form. When you take a daily vitamin or nutritional supplement tablet, your body must work hard for up to 4 hours to digest and absorb the vitamins and minerals. During that process, your body may not absorb enough nutrients to gain the maximum benefit it needs to remain healthy. Isotonix supplements use an isotonic formula to speed nutrients to your body where they are needed most.
 
PM me for further info
DX age 45:12/08 IDC & DCIS TNBC. 2/09:lumpectomy, 2 cm, grade 3, -nodes, stage IIa, BRCA- Chemo:Taxotere/Cytoxan x4.Double mastectomy 6/09. Zometa   http://www.caringbridge.org/visit/hollisimpsongough
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2009 at 7:54pm
Mrsmurphy,

Welcome to this forum.  You'll meet some wonderful people that will be here to support you.  I'm glad you joined and will be part of our group. 

I've been reading a terrific book:  Anti Cancer - A New Way of Life, by Dr. David Servan-Schreiber.  I'd highly recommend it.  I also bought a book about the anti-inflammation diet and plan on reading it next.

Regarding Vitamin D, there have been much discussion on this topic.  There should be some active topics discussing Vitamin D.  Have you been tested?  Most of us here have found our levels to be pretty low when diagnosed.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Captain Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2009 at 9:33am
Originally posted by mrsmurphy mrsmurphy wrote:

has anyone found any good info on diet that specifically helps with triple neg breast cancer?


We met with an oncological nutritionist at Dana Farber before my wife started chemo last month. With the exception of Vitamin D, she urged us to avoid supplements and to strive to get all her vitamins and nutrients from food. My wife is of normal weight so they recommended 85 grams of protein (sometimes hard to achieve but possible) and 5-10 servings of colorful fruits and vegetables each day. She also recommended a daily muilti-vitamin which gives 100% (not more than 100%) of the daily Vitamin D.

They also recommended 3-5 hours of walking at 2-3mph each week. I don't recall the stats, but this has shown to reduce recurrence rates by something like 40%
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2009 at 11:17am
Dear Captain,
Thanks for the update. Did she mention what is the 100% daily dose of Vitamin D?



Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2009 at 11:42am
In my search to educate myself I've found the most informative to be "Good Calories, Bad Calories" by Gary Taubes which goes into a beyond excellent explanation of how to figure all this stuff out, he's been on Oprah, it's not a diet book but an explanation (including studies on cancer and what they forgot to study!).
 
I put that together with a book by Barry Sears called Zone Food Blocks which shows you (with an index) of how to balance Protein, Carbs & Fat so they will work together to max your health.
 
I know many of the members have been told, myself included, that a low fat diet is a good idea and also that it has been proven to help TN in particular. I get concerned however when I get PM messages from members that they find they gain weight on a low fat diet.
 
I find that when a body is put through chemo etc for a year or more that it takes a tremendously long time for it to get itself back in balance...I have (as many do) developed a cholesterol issue, but rather than trying to spot check on issue at a time I'm trying to develop a well balanced overall eating regime. I must say, the depression after finishing rads snuck up on me and I've gained weight, and that was added to by a bad thyroid issue.
 
State of mind is an issue in any diet, but particularly for us as we battle our way towards the best health. I hike now 2 hours a day which is no easy feat. I hate the sweat thing on my head, just hate it, and I'm terrified I will develop heart issues from the Adriy or Rads, so I push myself to make the most use of my days. And I eat well balanced, home cooked meals, but I gained nearly 10 pounds in November, sometimes 2 pounds in a day! Talk about freaked!
 
So I'm trying to address my state of mind, keep hiking, get some better Thyroid meds and cut back portions until I find my balance but one thing I won't do is go off on a protein shake diet or something singularly strident that will make my body go off into another imbalance.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2009 at 7:20pm
Hey, I went the the Living Beyond Breast Cancer Conference in Phili,  Nov 14th this year and heard a great speaker on this subject.  I believe the sessions will be available for audio soon. Their web site is www.lbbc.org.   Here is the bio listed on her....She was great! One thing I really remember is that she said to keep your Vit D level between to at least 40-60.....32 is listed as normal for most labs....My oncologist was glad to know this....He wasn't even sure....So I am staying on 50,000 units vit d3 per week.....and will keep monitoring my levels....I am at 32 now....was at 16 at diagnosis.... I have notes on her speech which I haven't typed up yet but will be doing so soon.....Will be happy to share or you can contact lbbc and see when the taped sessions will be available....Now if I can just follow some of the suggestions.....About Our Plenary Speaker:  Dr. Wesa is a physician-scientist specializing in integrative medicine at Memorial Sloan-Kettering Cancer Center. She combines evidence-based complementary therapies with mainstream care to help cancer patients manage symptoms. Dr. Wesa is actively involved in investigating the scientific basis of complementary therapies and has lectured throughout the U.S., India, Europe and Asia. Her primary research interests include vitamin D, medicinal mushrooms, botanical therapies and mind-body therapies. She received a Bush Medical Fellowship and a post-doctoral research fellowship in complementary therapies and clinical research from the National Institute of Health. Dr. Wesa is a reviewer for the Journal of Alternative and Complementary Therapies, the Journal of Pain and Symptom Management, Cancer and the Journal of the Society for Integrative Oncology.

Oh, and there was also a great MD there talking TNBC....Lots of info on PARPs....here is her info....Triple-Negative Breast Cancer: Understanding Treatment Options and Post-Treatment Concerns

Ramona F. Swaby, MD, Associate Member, Fox Chase Cancer Center, Department of Medical Oncology

Dr. Swaby will discuss which groups are affected more often by triple-negative breast cancer and why. Learn about available treatment options, how to manage follow-up care and the importance of participating in clinical trials to further research development.

Good Luck.....ChristiSmile



christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mrsmurphy Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 1:08pm

Thanks everyone, I will be adding all those books to my collection, I currently have: The Cancer Recovery Eating Plan by Daniel W Nixon, MD and DKs Foods to Fight Cancer.  Interesting things I have found on my research: the link of carcinogens and meats (especially red) cooked at high temps, like grilling.  We have switched to lots of organics and natural meats daily, trying also to cut back on sugars.  And also trying out the Japanese diet, miso and rice and raw veggies, they have the lowest cancer rate in the world, their diet the main proposed reason.  And, for Christmas I have asked for a good juicer, you can get all 5 servings of fruits and veggies in 2 glasses of juice a day, make fruit juices with no preservatives or sugar, etc.

Also, has anyone else tried red wine to help with radiation side effects?  Ive heard a glass a day (or night) can cut back the symptoms up to 70%.  Researching organic sweet red wines too, must come from grapes.
 
Thanks bunches every one,
MrsMurphy
33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChrissieD Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 7:08pm

Be sure you are taking D3 (not D2) also, you should request your doc test your current level.  Your level needs to be above 65 if you have a history of cancer.  I currently take 4,000iu's / day.  I think the old daily allowance is only 400iu's.  It is not enough.  My son's pediatrician suggested he take up to 5000iu's/day and he is only 9. 

Nancy has posted a ton of information on D3 and testing.  Go take a look at the documents and research section of the site.  You will find lots of good stuff.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mrsmurphy Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2009 at 11:21am
Thanks Chrissie, I meet with the oncologist on Mon, will ask for the test, then I start radiation that afternoon!  Is anyone else just DONE with this?!
33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2009 at 11:31am
Kidzrn: You may want to check you Vit D as we have all looked all over the place and can't find a Vit D3 that is in the 50,000 range. The 50,000 IU is generally the one given by script from you onc and is a Vit D2 which is definitely NOT the one that we need.
 
Also, as Nancy has posted from the Vitamin D Council, those that are cancer patients need to have their range between 60-90 not the lower levels.
 
As always, when going wth the larger doses of the D3, one should always have the Vit D checked with the regular blood work you onc is doing for you.
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2009 at 9:05pm
Dear Christi,
 
If you are on vitamin D2 (and as Mainy said..we do not know of any script for D3), then you will never get your levels where they need to be for a woman dx with bc, which is to 100 ng and above, and not between 40-60. D2 is totally worthless.
 
I just received the 500 brochures today from LBBC )...(Living Beyond Breast Cancer's Guide  to Understanding Triple Negative Breast Cancer, which Lori and I will distribute), and I am a bit disappointed as to the lack of information on D3, nutrition and supplements also. They say to get your vitamin D and other nutrients from your food. That will never get your D levels where they need to be to prevent cancer or another recurrence. There is not even a mention of all the other vitamins/supplements which are proven to fight cancer such as Magnesium, Selenium and K2, and all the foods also proven to fight cancer.
 
With all the information/articles/studies on D3 within the past 2 years, they could have had detailed information on how terribly important this one vitamin is, for not only preventing cancer, but preventing another recurrence. Yet they chose to state to get your D and other nutrients from food.  
I also just received January's issue of Life Extension magazine and there is an article on D3 which is 8 pages in length. They are telling their members that Dr. Cannell supplied them with published papers arguing that optimal doses for adults are between 4,600 and 10,000 IU, with persuasive evidence that 10,000 IU a day of vitamin D is not toxic. In fact Life Extension will now only produce Vitamin D3 in 7000 IU capsules.
 
No, I am not promoting this organization, but their research is really quite impressive. Everyone needs to have their D levels checked at least every 6 months, and that is especially important for anyone dx with cancer. Your doctor needs to check your calcium levels also. If you have to ask your doctor for these tests, then they really have not been keeping up with all the latest research on fighting cancer. 
 
Get those numbers up Christi!! If you are not taking Magnesium, then the D3 will not be absorbed.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Scott Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2009 at 4:07pm
Hi Nancy, just making sure I understand because we're seeing my wifes dr. in the morning before chemo #3...we need to talk to him about taking magnesium and d3?  Also, is that now, or after chemo's over.
Thanks, Scott
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2010 at 9:25pm

Cancer Cells Use Stored Fats to Fuel Aggressive Growth and Spread

http://www.cancer.gov/ncicancerbulletin/011210/page3#e
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote HolliBeri Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2010 at 10:23pm

All valid points about Vit D.

Remember quality when it comes to your supplements!
DX age 45:12/08 IDC & DCIS TNBC. 2/09:lumpectomy, 2 cm, grade 3, -nodes, stage IIa, BRCA- Chemo:Taxotere/Cytoxan x4.Double mastectomy 6/09. Zometa   http://www.caringbridge.org/visit/hollisimpsongough
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judy Rae Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2010 at 11:16pm
I am new to this website; just read the comments because i am not going to do chemo as of what I know now; considering radiation; 2 weeks ago had lumpectomy and lymph nodes out; 5 of 13 positive.  I have refined my diet and lifestyle: no microwave; no sugar; no alcohol, no caffine, no chlorine, no flouride, little dairy; tons of veggies via juicing and eating; supplements of enzymes, probiotics, vitamins. Anyone read "Cancer, think outside the box" by Ty Bollinger?  Anyone had success with this type of therapy and no chemo?  I accept all opinions even if you think I am nuts!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2010 at 12:23am
Judy, could you tell us more about why you have decided not to do chemo?    It is certainly unorthodox to forgo chemo with a TNBC, especially if it isn't teeny tiny and node negative.    Many of us would be afraid that we would be giving up our 'shot' at a cure, though of course none of us knows in advance if we need chemo, or if chemo will even make a difference.   

I guess if you want me to be blunt, I'll say that on the face of it - yes, I think you're nuts.  Your cancer has already shown itself to be capable of metastasizing, at least to lymph tissue.  That makes it more likely that it has taken up residence in other parts of your body as well.   Chemo, IF it works well for you, could mop up the little micromets we are all assumed to carry when diagnosed.   By not doing chemo, you are giving up somewhere in the neighborhood of 15-25% probability of a cure.  That may not sound like much, but in cancerland those are big numbers.  Right now, without chemo, a high grade TNBC with 5 positive nodes has something like a 30% chance of being cured by surgery alone.  That means you are 70% likely to recur (which would SUCK).  Add chemo, you are brought up to around 50-60% likelihood of cure (40-50% likely to recur), *much* better odds.  Then again, there is the wisdom of the body to consider.  It could be that you have deep ways of understanding what is happening inside your body, and those signals are sounding the 'all clear'.  If that were the case, you would be right to avoid chemo.  Or, you might have a strong sense that chemo won't work, or that it will harm you more than it will help you.  If that were the case, it would also make sense to avoid chemo.  You have to decide.  If you base your decision on the research compendium, the evidence is overwhelmingly in favor of you doing chemo.  But whatever you decide, we will be right by your side, supporting you all the way.

Love,
Denise (I hope this didn't come across as too harsh...since you asked, I thought I might as well tell you what the research has to say so you can make an informed decision)

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2010 at 3:43am
Judy,

Do you know that cancer cells survive off the same nutrients as all of the normal cells in your body? If you eat everything that you need to be healthy, you're also making your cancer cells healthy too.

Chemo is bad for you. Very bad for you, but it's also very bad for your cancer cells. A lot of scientists have done a lot of research trying to find the chemos that are more bad for your cancer cells than they are for you. And then they give you just enough so that you barely survive because that's what it takes to kill those tumors.

Anyway, that's my thoughts.

On another note, reading through this thread got me thinking about this vitamin D issue. What percentage of those diagnosed with breast cancer have low vitamin D levels? Is it all of them? Also how many people without cancer have low vitamin D levels?

I'm wondering if a vitamin D level test would be just as accurate as a mammogram at detecting breast cancer.

I also found Donna's article, "Cancer Cells Use Stored Fats to Fuel Aggressive Growth and Spread" very interesting. The articles said that fat is used as the building blocks to build the new cells, but didn't say anything about th fat being used as fuel. Everything I've been reading lately has said that cancer cells use sugar as fuel and lack he ability to use fat as fuel. I guess now I have a lot more reading to do.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mrsmurphy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2010 at 10:15am
Wow,I never thought about NOT doing chemo, I just found out what to do to make my chances better for survival, and chemo was #1.  Yes, it's hard, yes you will be miserable and sick and depressed and bald, but so have all of us.  Good news: its TEMPORARY, my hair is growing back and although daily radiation is tough and tiring too, it's not nearly as bad as the chemo.
 
Please rethink your plan, I only had 2 positive lymphnodes and was scared out of my mind, but I did the chemo as fast as I could.  I have 6 children and a husband to LIVE for, and there is more support than you could imagine.
 
just look at this forum!  we are all here for each other!
 
Mrs. Murphy
33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July!
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