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04-30-2007, 06:04 PM
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#2
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Hey R.B., I love all of your information and just wanted to share. I used to take a billion things and when I remember and take the time to eat, I eat really well and have eaten well for years (pre-diagnosis even) i.e. all organic, whole grains, tons of fruits and vegetables-my favorite food is salad with olive oil-for real. I've never been a big meat eater, very rarely in my adult life and small amounts as a kid. Lots of garden veggies and some junk when I was a kid too. I love wild salmon and try to eat that weekly.
I took EVERYTHING throughout my diagnoses: cal/mag, antiox, b's, coq10, turmeric, quercitin, mushrooms, organic green drinks, garlic and efa's heavy on the 3's and all that kind of supplement stuff.
Then as we all share info and research and i do a lot of my own especially nutrition relate i started to get really confused about what might interfere w/ chemo, herceptin (i've even tried to understand what substrates are). I also got confused by hormone receptor status and flax, as one example, and what is preventative vs. proliferative.
So now I just don't know what to take given whatever drugs I am on (meaning chemo, not like heroin or anything  ). I am taking Fishsmart Ultra by Renew life anywhere from 300-900mg (epa) and 200-600 (dha)/day. I also take my probitics too.
So, I don't know what to do given all the variables. As an experiment I stopped taking all of the other stuff during this time of stability on navelbine/herceptin to see if we would get tumor regression i.e. was anything I was on interfering with chemo.
I wish I could get a very researched, balanced customized supplement plan given that I am stage IV, her +++, er+/pr+ on navelbine/herceptin with a potential for tykerb/xeloda in the future.
just volunteering too much information as usual.
thank you for all of your interest and information.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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04-30-2007, 06:23 PM
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#3
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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RB, here's the breakdown of my 3-6-9 supplement:
Flax Seed Oil, 400 mg. - 212 mg Alpha Linolenic Acid, 47 mg Linoleic Acid and 75 mg Oleic Acid.
Fish Oil, 400 mg. (from "molecularly distilled fish oil from cold water fish") - 72 mg EPA and 48 mg DHA.
Borage Seed Oil, 400 mg. - 128 mg Linoleic Acid, 76 mg Gamma Linolenic Acid and 78 mg Oleic Acid.
If this sounds like "Snake Oil", I'm open to suggestions on whether I need to just go with just a straight Omega 3...
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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04-30-2007, 06:45 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hello R.B.
I started a thread to you or whomever could help me decipher the Omega 3 supplement I am taking. The rest of my diet story is listed in their as well. Since herceptin is done, Oct. 11, 2006 I am down about 20 pounds. Some of that I think is just ridding my body of the drugs BUT I know I've changed a lot of things in my diet. Especially elimating LOTS of sugar.
Thanks for all you do to educate us here at her2support.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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05-01-2007, 04:16 AM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Snake Oil !!!!!
Ironically the original Chinese snake oil was used for inflammatory conditions, arthritis etc. It is reported it was made from water snakes which are reputedly high in long chain omega threes!
http://en.wikipedia.org/wiki/Snake_oil
Lolly
You need to also consider sources of omega six in your diet - vegetable oils mainly - what do you cook with - do you use margarine or equivalent spread - do you check labels of processed foods.
There is an argument for moderate fat intake too.
Nothing wrong with a bit of GLA. The items listed are in dietary terms low and do not contain much omega six - but it depends how many units of the supplements you are taking.
By way of example a brazil nut contains a gram of omega six. 46 grams of sunflower seeds contains 15 grams of omega six!!! So nuts and oily seeds in moderation except flax etc.
http://www.nutritiondata.com/facts-C00001-01c20nc.html
If you want to increase your long chain omega three DHA etc, and are not vegetarian fish oil is the best option. Bottled is cheaper. Those labelled cod liver have different profile from fish oil and different levels of A and D etc.
Please do talk to your doctor as fish oil does lead to blood thinning etc.
Thank you ever body for the kind words. It is encouraging that people are thinking about essential fat intake and whilst it is always difficult to draw conclusions with better diet seeing improvement in life quality.
RB
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05-01-2007, 08:20 AM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Thank you RB, and especially for the education on the real use of "snake oil". Never again will I use that term as a deragatory reference! I only cook with EVOO(perhaps I should add snake oil to my culinary cabinet) although I do use small amounts of butter when I hanker for a piece of toast(whole grain of course!)
I've been taking only one capsule daily of this supplement. I was wondering if I needed to take 2 caps, but will look for a straight fish oil capsule to add instead. And will talk to my onc.
Thanks again,
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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05-01-2007, 10:05 AM
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#7
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Senior Member
Join Date: Dec 2005
Posts: 148
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Fish Oil from Carlsons: 1 teaspoon Omega 3 fatty acids 1100 to 1250mg
Flax Oil from Integrative Therapeutics Inc.: 1 tablespoon Omega3=5250mg, Omega6=2625mg, Omega9=2600mg,GLA=325mg
Apart from this I cook in olive oil and have a long list of supplements that I take.
I am on a low fat high fiber diet and primarily a vegetarian diet with salmon once in 2 weeks.
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