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Old 07-12-2013, 06:47 PM   #41
Andrea Barnett Budin
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Re: Why i take supplements

L-ARGENINE -- 500 x 2 (AM) on an empty stomach -- Dr. Best brand w/time release -- EJECTION FRACTION ELEVATOR, STRENGTHENS THE HEART

Also, as I've mentioned Co-Enzyme Q10 -- 150 (AM/PM) to strengthen heart + good for gums and energy +++ more
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-15-2013, 10:17 AM   #42
bmorr7
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Re: Why i take supplements

Hi everyone,

What an amazing thread. After all of my reading, we're thinking of the following regimen for Rachel while she's on TCH. We'll need to review all of these with our oncologist and also try to figure out the right doses. Not sure we can take all of them so if others can let us know which are the most important, pleaes let us know.

Thanks!

Ben

1. Vitamin D (to protect bones/heart)
2. Fish oil (to protect heart)
3. Coenzyme q10 (to protect heart)
4. Biotin (to protect skin/hair)
5. Alpha lipoic acid (to protect nerves)
6. Magnesium (to protect muscles/heart)
7. L-carnintine (to protect nerves/brain)
8. L-arginine (to protect heart)
9. Evening primrose oil (not sure what it's supposed to help)
10. Milk thistle (to protect liver)
11. Tumeric (not sure what it's supposed to help)
12. Green tea (not sure what it's supposed to help)
13. Aspirin
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Old 07-15-2013, 01:11 PM   #43
Andrea Barnett Budin
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Re: Why i take supplements

Hi Benjamin,

I am thrilled you are interested in supplementation, as I do believe it has been a part of the recipe that keeps me alive and well.

In '95 I was dx w/4th stage lobular carcinoma (L). The surgeons did a surgical biopsy of both breasts. Only the left was involved. And may I add -- when I metastasized in '98 -- Herceptin was not yet a possibility (still in clinical trials) and therefore I didn't have the benefit of receiving that which may have prevented my recurrence.

In '95 I had a mastectomy and tram flap reconstruction, on the same table. This was very important to me, and my sanity. You can read my protocol below in my signature.

In '98 I learned that I was 80% positive for HER2, which though it meant my highly aggressive bc was even more of a mountain to climb, I felt I could potentially have benefit of Herceptin to target the defective gene that has been found to be responsible for about 20% of bc.

I went with not the kinder gentler chemo (Navelbine) recommended by 1 of my oncs, and not with Taxol (a cousin of Taxotere) recommended by another of my oncs. I went with Taxotere because my 3rd onc said it was the most aggressive weapon they had in their arsenal. I DETERMINED TO TAKE THE HARDER ROAD, AND FIGHT FIRE WITH FIRE!

I'd read much re supplements and integrative therapies between '95 and '98. Learned a lot. Went immediately to the integrative onc who specialized in supplements, meditation, guided imagery and working with the patient to help them heal in ways others oncs raise eyebrows over.

2 of my oncs did NOT want me to do the supplements until AFTER I was done with chemo. Because they didn't know how their properties would interact with the chemo drugs. I asked my nutritional oncologist (who I have come to adore, and who I lovingly call my nut onc) -- What do you think? He believes that DURING CHEMO IS WHEN YOU MOST NEED TO BE ON SUPPLEMENTS!! And, though it took much courage, I KNEW I was talking about MY life and MY body -- I chose to take the supplements from the getgo in '98...!

I am forewarning you that your docs are likely to frown on supplements and especially during chemo. But it is a decision you and Rachel need to make based on your gut (what I call my Inner Voice) and proceed as you feel comfortable.

I've learned much more since '98, as you can imagine. I am not a medical person but I am an avid learner and this topic is one I am strongly interested in, as a matter of Life and Death, if you will.

I imagine you've glanced through my ridiculously long list of supplements.

I always offer them to those who ask, with my dosage (as recommended by my nut onc) and I give the reason why I take each. I've googled and read up on each and every one.

I am happy to share. To encourage you to increase the odds in your favor (and of course Rachel's). Don't get caught up in dreary statistics. We are each a potential miracle.

I will tell you my Richard Bloch story one day, if you like (H & R Bloch). He beat 4th stage lung cancer back when no one was winning on that front, when his docs told him to get his affairs in order and I chose to survive anyway! There are lots of such stories. Read about those and throw the books about poor odds aside!

After to review my list in this thread -- please ask any and all questions you may have! I stand ready and more than willing to guide you as best I can.

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-15-2013, 04:25 PM   #44
bmorr7
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Re: Why i take supplements

Hi Andi,

I've looked through this thread and can't find your list of supplements with doses. Can you post the link to that.

Thank you so much.

Ben
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Old 07-15-2013, 04:35 PM   #45
Andrea Barnett Budin
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Why i take supplements

HERE'S MY LIST, AS REQUESTED:


Swallowing all these darn pills is a laborious task. One at a time. That's my method. My husband tosses a bunch of his pills in his mouth at one time. Misses a few on the way. I can't even entertain such an idea!

I put them all in the plastic lid of a container (so they won't roll away), situate myself in front of them and the TV and try not to think about anything other than what I'm captivated with on the screen.

I find swallowing pills difficult to say the least. I BUY ONLY CAPSULES, OR SOFTGELS. NO TABLETS! Impossible for my throat. I think of peristalsis which I learned about in high school. The power of the natural wave like muscles in our throats to move food or pills to their destination is compelling. The key is to relax and not over think...

My longggg list of supplements come from my oncological integrative doc in Manhattan, who helped save my life in 1998 when I metastatisized with tumors throughout my liver. I will share the key ones for those who are interested. (I purchase through Vitacost.com, as their quality is excellent and their prices can't be beat.)

Devoting the time in the AM with a meal, and again at 4 o'clock w/a banana -- every single day -- takes tenacity to be sure. But I feel I am worth it. So are you! The investment is serious. To me, it's a matter of Life and Death.

I DRINK WATER (FOR ME -- ROOM TEMP IS BEST). I DRINK 10 8-OZ GLASSES OF WATER A DAY! BOTTLED, FILTERED WATER. EVERY SINGLE DAY. YOUR ORGANS WILL THANK YOU. SO WILL YOUR SKIN. YOU WILL STAY HYDRATED. I HAVE SEEN WHAT DEHYDRATION CAN DO TO A PERSON. IT CAN LITERALLY PUT YOU INTO A LIFE-THREATENING SITUATION. IT IS YOUR JOB TO STAY HYDRATED, THROUGH NAUSEA AND FEELING LIKE YOU HAVE THE WORST FLU EVER.

I AM NOT A MEMBER OF THE MEDICAL PROFESSION. I AM A SURVIVOR. I HAVE GOOGLED EACH AND EVERY SUPPLEMENT I TAKE. I TRY ONE FOR 3 DAYS, LISTEN TO MY BODY'S SIGNALS, AND THEN PROCEED TO THE NEXT SUPPLEMENT.

Alpha Lipoic Acid 300 AM/PM -- detoxifies liver, antioxidant, neutralizes free radicals, protects cells from damage -- AND RELIEVES MUSCLE PAIN -- IN COMBINATION WITH THE NEXT 2:
Co-Enzyme Q10 -- 150 AM/PM -- which also enhances immune system, prevents cancer cell proliferation, energizes, healthy heart, good gums -- RELIEVES MUSCLE PAIN -- IN COMBINATION WITH Alpha Lipoic Acid and L-Carnitine 500 AM/PM
L- Carnitine 500 AM/PM -- assists gastric absorption, energizes, heart healthy, immune booster -- RELIEVES MUSCLE PAIN


B-6 50 AM, heart healthy, energizes, helps repair nerve damage, good for skin
B-12 sublingual (3,000) -- energy

WHEN I HAVE MY COMPREHENSIVE BLOOD WORK DONE I ASK THAT B-12 AND D BE INCLUDED SO I CAN KEEP TABS ON BEING IN THE NORMAL RANGE. I save every report ever written about me and keep them in a NO MORE CANCER file at home. I compare the new with the last, line by line.

That is how I -- yes "I" -- found my metastases. Asked for abdominal sono, which led to CT which led to biopsy. My tumor markers were still within normal range. But my liver enzymes were ever so slightly different from MY USUAL. Doc kept saying, I wouldn't worry about it. It is very very slight. Well, YOUR #s generally follow a trend. If they vary, I see red flags. Just saying...

C-1,000 w/bioflavonoids 1,000 -- enhances immune system, reduces recurrence of cancer
D-3 -- 50,000 a week. I take 10,000 over 5 days a week. For healthy bones, blocks breast cancer cell growth, meets your body's organs increasing need for D as we age. BE KIND TO YOUR ORGANS. THEY DEPEND ON YOU.
DL-Phenalalanine 500 AM empty stomach -- mood enhancer
Evening Primrose Oil 1,300 AM/PM -- relieves hot flashing, down-regulates HER2 by binding to extra cellular HER@ receptor, down regulates internal proliferation
Folic Acid 100 AM -- red cell booster, heart healthy
Gingko Biloba Extract 60 AM/PM -- mental alertness
Grapeseed Extract 150 AM -- anti-oxidant, can cross blood-brain barrier and protect brain and spinal nerves against free radical damage, enhances anti-tumor effect, protects liver, strengthen connective tissue, including heart system, supports immune system and slows aging
Resveratrol 250 AM/PM -- anti-oxidant, heart healthy, anti-cancer, HER2 blocker
NAC (N-Acetyle Cysteine) 600 AM -- supports healthy liver function, rids body of toxins
NADH -5Co Engzyme 1 (AM/PM) 1/2 hr before eating -- relieves chronic fatigue, boosts mental acuity
Omega 3 - 2,126 -- suppresses tumors, inhibits their growth, may slow or prevent recurrence of cancer, improves blood glucose, good for muscle/joint pain, anti-inflammatory, down regulates HER2 receptor
Phyto Formula -- 1 scoop w/OJ -- promotes energy BIG TIME, reduces chronic fatigue, boosts immune system and increases mental clarity + 1 banana a day!
Potassium Citrate 99 AM/PM -- bone healthy, energizes, healthy heart, prevents stroke
RM-10 Garden of Life Immune System Mushroom Blend VEGETARIAN CAPSULES -- AM/PM on empty stomach -- I take 2 instead of 3 a day because it's expensive but powerful in regulating and stimulating the immune system, anti-oxidant, detoxifier, reduces recurrence of bc
ZINC 30 anti-cancer

There are studies and experts who disagree w/the findings above. i could have waited for more studies in '98, but my Inner Voice guided me to not go with mainstream conservative western medicine on this.

I began my '98 chemo regimen in September. In Oct I developed Shingles. Excruciatingly painful but the worst of it was -- no more chemo. Not till the Shingles is gone, said my onc. Your immune system is too compromised...


I "knew" I was 4th stage metastatic bc, now w/new information that I was HER2+... Highly aggressive form of cancer. Without the chemo, I feared I would die. My need was urgent, and of necessity was put on hold.

So I took all my supplements, used multiple bottles of calamine lotion and pain meds and in 10 days returned to my onc -- virtually unheard of. I was sitting on the examination table. My onc smiled and asked how I was doing. Good I reported, smiling back. Well, let's see. He was doubtful, skeptical. I lifted my shirt. He walked around me in utter amazement. YOU'RE RIGHT. ALL THE PUSTULES HAVE DRIED UP! YOU CAN HAVE CHEMO!!
Hurray!!

I am happy with my bold decision to this day. I continue on my supplements. It is grueling. I'll give you that. But, I KNOW it is my job to be healthy and well. I take that responsibility very seriously. I chase away all negativity!

I still (after allllll these yrs, go through inscanity when I am due, same as always, but I tell myself -- this is yet another opportunity for me to see the fruit of all my hardwork. I try my best to hold my panic in check, along w/my husband's which is greater than mine. I get same day reports. And, I remain STABLE. No evidence of disease. 15 years from my metastasis. Almost 5 years off of Herceptin (after 10 years on). 18 years since my original 4 stage dx.

I have taken the time to share all this, because I believe in YOU. I support you with all my heart, my Sisters. With love always...

Andi

In my supplement list, I forgot to add:

Vitamin E 400 (2AM/1PM)
Selenium 200-- WHICH IN WITHIN THE RM-10 ULTRA IMMUNE BOOSTER I LISTED ABOVE IN PREVIOUS POST HERE
+ Echinacea w/astragalus 2x a day for a wk -- then Thymulus 2x a day for a wk -- then switch back to echinacea w/astrag. Supports the IMMUNE SYSTEM, which is so key! This alternating way -- ON 1 wk and OFF the next w/substitute -- helps you not build up a tolerance to the immune booster.








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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-15-2013, 05:08 PM   #46
bmorr7
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Re: Why i take supplements

Thanks Andi!!! That is so helpful. Thank you so much for all your hard work to figure all of this out. Do you have favorite brands for any of the supplements?
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Old 07-15-2013, 06:42 PM   #47
Andrea Barnett Budin
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Re: Why i take supplements

I use Vitacost.com -- for most of my supplements. The products they carry are of very good quality and are all discounted. Shipping is free over $50. As you can imagine, that is easy to reach. I order monthly.

Those I can't get from Vitacost, I get from VITAHEALTH APOTHECARY in Manhattan. Dr. Gaynor (my nut onc) recommended them. They ship to me free since '98...
212) 628 - 1110

I keep an alphabetized list of all supplements, along with dosage, time I take them, and why I take them.

Most docs are just annoyed by my list. They are impressed that I am organized and most respect my belief system. Mainstream docs don't really know much about supplements and think they are a waste of $$. Western medicine spends about a day in med school on the topic. It is shameful IMHO...

I wholeheartedly disagree, as Dr. Gaynor, Dr. Andrew Weill, and any # of respected docs.

Post surgery recently (needed a biopsy for something new -- first time since '99 -- but BENIGN) -- I discovered:

Zinc is also important in helping to repair wounds, optimal recover for everyday tissue damage. I don't exceed 30 mg as that can cause stomach upset.

The importance of Vitamin C to make collagen and ensure proper wound healing for optimal recovery from tissue damage should not be ignored.

Arnica Montana is also important in wound healing I have found out (meadowsweet extract). Can ingest and/or use gel...

My surgeon when he told me to use a dressing each day -- consisting of a bandaid (when he saw me a wk after surgery). I asked if I should cream or Neosporin. You can, but it won't do anything! Seriously. No after surgery wound care. 1 of my 3 laparoscopic punctures looked and felt like a bullet wound. He said it wasn't infected. Just very red, perhaps from irritation due to its location at my waist. I asked about the yellow oozy stuff. He shrugged... That did not please me. As you might have already guessed. I used Neosporin. Increased my immune system booster and Vitamin C for a wk...

I had a wonderful endocrinolgist who used to ask, Do you also take eye of newt??? I loved her. But she moved too far from me. She did write down Evening Primrose Oil from me to deal with her hot flashes.

I like docs who are open-minded. My fav onc has (reluctantly) added a nutritionist and other alternative therapist to his practice. He is sharp and extraordinarily compassionate, but just kind of smiles at my list! I was his first patient, in 1995. My husband and I adore him. I have his email address and cell #, just in case, which he responds to within a half hr... I never take advantage of this privilege.

It is our responsibility as patients to make all our docs aware of what we are taking in addition to our meds list -- which I keep a typed alphabetized list of in my wallet. I have one for my husband as well that I keep in my wallet and give him a copy to keep in his wallet. Every doc wants to know what meds, the dosage, etc. you take.

My recent discovery of the combo : Alpha Lipoic Acid, Co-Enzyme Q10 and L-Carnitine -- all of which I take -- help enormously for muscle aches and deep pain. A local cardiologist wrote a book I read. He was a mainstream doc until about 5 yrs ago. He is now into supplements and discovered that combo for his patients on statins.

My friends all have aches and pains, comment that it's our age. I don't have aches and pains. THANK HEAVENS! I now believe it is because of those 3 supplements I've been on forever.

When we rescued our first 2 dogs, the rescue lady gave me a book by a Cornell trained vet. He too was mainstream until about 20 yrs ago, when he discovered the efficacy of supplements. Our 2 Maltese brothers were seriously sick. I went by his recommendations and added some supplements to their diet. I guessed at the dosage, based on their small size.

Our vet was quite amazed when we next brought our furry boys in. My husband asked why. He said, Because usually when they are that sick, they don't make it! (He had given the sicker one a mini chemo bath. One paw at a time over the course of a day. The meds he was giving weren't doing the trick.)

It's my pleasure to help. We're all here to help one another. Don't be shy -- just keep your questions coming...

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-18-2013, 04:53 PM   #48
Andrea Barnett Budin
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Why i take supplements

Saw my onc yesterday. My now ev 6 mnth checkup.

He has known me since October '95 after initial dx. And through it allllll....

He says I am his only 4th stage patient that has survived this long. THANK YOU GOD! And for me -- also -- thank you supplements... + meditation/mantras/guided imagery...

Onc says there are no guidelines for pp like me. I now get ev 6 mnth blood work and annual CT scans (chest/abd/pelvis) -- and now -- without contrast. He doesn't want to expose me to that stuff unnecessarily.

So, we're making up the rules as we go along. He was calm 3 yrs ago (then 2 yrs off Herceptin) when my tumor markers started trending upward and out of normal range. I was the one needing calming... But in 3 mnths -- my TMs plummeted right back to where they were.

I'd been sick for 3 mnths prior to that with a miserable, worst ever virus that wouldn't let go. Many others in town had the same thing. My body was out of whack. But within 3 mnths -- it recovered!!

Onc was sure I HAD to go for the biopsy when my CT abdomen/pelvis scan report said there was NEW stuff. It has been known, he now tells me, to spread to that area. And we HAD to check it out. I listened. Though I felt certain, as most of us did, that it was nothing. My Inner Voice told me I DO NOT HAVE CANCER. But I did what anyone in my position, given my medical history, which I carry with me...

The prep for the surgery sucked. The surgery was ok, though I wouldn't recommend it. ))

Post op was a lot rockier than I anticipated, but 3 wks later -- I am back to being and feeling like ME! WITH A GOOD REPORT
-- BENIGN inflammatory nonsense, no longer mystery mass mess... NO EVIDENCE OF DISEASE...

I am sticking with my supplements...!!!!!!!!!!!

TAKE GOOD CARE OF Y O U , my Sisters!

With LOVE, as always,

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-19-2013, 04:07 AM   #49
Ellie F
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Re: Why i take supplements

Hi Andy
I always enjoy reading your posts, they often give me a lift.
What do you take for your irritable bowel ? I remembered that you had a bout of this prior to your scan. Have you found anything good that works? I have had this on and off since mt twenties and it often flares up under stress like getting scans?
Any tips appreciated
Hugs Ellie
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Old 07-19-2013, 04:26 PM   #50
Andrea Barnett Budin
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Re: Why i take supplements

Hi there, Ellie!

So glad to hear my words bring you a lift. We all need that!

I've had IBS since '95 w/and subsequently from chemo. In '98 Taxotere really did me in.

Since off Herceptin (5 yrs now) I have been getting better. Somewhat.

Key is my list of TRIGGER FOODS. I've kind of narrowed it down -- and don't touch anything w/fruit, nuts, corn, squash, bok choi. Eat as little sugar as possible. Did go totally off for -- 4 yrs -- but have decided to cheat a bit. Dark chocolate is actually good for you! Especially w/red wine and all those resveratols! DO YOU HAVE A LIST OF TRIGGER FOODS FOR YOU??

I can eat bananas, and do daily. And an occasional apple. ALL other fruits create havoc w/me. I read labels judiciously, scouring for a hint of corn. I've read they are processing it in a new way and many have allergic-like reactions to it. Guess I'm among those. NO popcorn, corn niblets, corn flour... THINGS I LOVE.

I was convinced cancer loved sugar, and I didn't want to feed it. So now, I just do small treats here and there.

My nut onc gave me WOBENZYM N -- 2 tablets 1/2 hr before a meal. I take twice a day. That made a huge difference! I had graduated to 1 tablet twice a day, but since the Milk of Magnesia -- to clean me out prior to abdominal surgery (just over 3 weeks ago) -- my stomach hasn't yet come back to itself.

Until recently, at the first sign of stomach gurgling (like water in a rusty pipe) or cramping -- I started taking LIQUID IMODIUM. The tablets stopped working for me. Even if I took 20 in a day! I turned myself into my doc, and he said, Ok. If you take all that, then what happens? I said, the bathroom drama stops. Ok, good. And what happens the next day? I am normal. Good. Don't worry about it...

But when we lost our much loved Brenda, I began reading her old posts. I think I was searching for a reason for her sudden decline. Well, she mentioned that when on TDM 1, she would take liquid Imodium and 1/2 cup and she'd be good to go...

I tried it. Can't understand why that works. But it's quite amazing.

When 2 -- 1/2 cups don't work -- I move to my backup plan. DIGESTIVE ADVANTAGE for IBS. If I take that soon enough, before my stomach has crossed the line (kind of like catching a migraine headache before it is too late to grab hold of it and stop it), it works! It's a probiotic.

I used to take Acidopholus. Thought it wasn't working and stopped. This drug store brand DIGESTIVE ADVANTAGE FOR IBS has -- a specially patented Ganeden BC, which is considered a healthy bacteria that works within the Intestinal Ecosystem. You can take 2 if needed. You can get this at Walmart (best price).

I also take DIGESTIVE ADVANTAGE GAS -- for relief -- daily, at night, and it is remarkable how much it helps!

If all else fails -- I take a Roxicet -- or anything with codeine in it. I remember my onc telling me (during chemo days) at the very first sign of pain -- take the Roxicet. I asked, Really??!! He said, absolutely. There is no reason for anyone to suffer! That's why we offer these drugs! And, he added, if nothing else -- it'll stop the diarrhea. Sure enough it does.

So I save that (still working off a 2005 bottle I keep laying around) -- if all else fails. I rarely need to resort to it. And, my problem begins around 2 AM for some unknown reason, so it also helps me sleep.

I've been to 5 gastro guys and was given a dozen different remedies. And nothing worked. Well, but for something like Lotromax -- and they took it off the market. People were dying. It was my guess they were miss diagnosed and created a blockage and died. The outrage was huge. People were relying on that drug in order to live a normal life! Me included.

I have heard that it is back, and that docs give it sparingly, super careful. But I haven't been as bad as I was during chemo, which kept me home for days, and in fear if I did venture out. I knew where every bathroom was, in every store, in every restaurant, so I could make a mad dash. I carried a bottle of water at all times, w/my meds to take when needed! The fear factor is huge!

One gastro guy prescribed OPIUM, I kid you not. I still have the unused bottle. I just couldn't go there...

If I am caught for many hrs on the seat, KY gel is miraculously soothing. I'm just saying...

Please tell me what YOU do. All tips are gladly received!

This was one of the main topics of discussion in the chemo rooms, as we patients sat for all those many many hours. We'd compare notes. Nurses would chime in. They've seen it all. Including those suffering from the opposite problem -- constipation. Milk of Magnesia and magnesium (starting at 400 mg, and increasing another 100 mg every half hour till successful is the scoop on that). Not my concern. I have other issues.

I keep a book or two by THE SEAT along with pen and paper, to occupy myself as it gets really boring sitting around waiting for the next... My kids can't stand when I discuss this topic. All grown up and so squeamish... )) Their children's poops are not a problem for them, as Moms, you do what you must...

Well hope this helps. I await your input. Anybody and everybody's input!

FEEL GOOD...

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 08-01-2013, 03:51 PM   #51
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Re: Why i take supplements

SOMETHING NEW TO REPORT...!


SOME FASCINATING THINGS TO THINK ABOUT:

I'VE BEEN TAKING OIL OF OREGANO, as my IBS reached ridiculous heights after my abdominal surgery experience 6/27. I saw a doctor on Dr. Oz, who was touting the use of this supplement specifically for diarrhea and digestive problems. She said she would recommend taking it at least 3X a day.
I started with 1 a day. After a few wks, I have moved to 1 twice a day, with food.
What is the ORAC Value of OREGANO? 15,300 µTE/100g

Why be bothered with this number? ORAC stands for Oxygen Radical Absorbance Capacity. It tells you the antioxidant capacity of a food item. Antioxidants have shown to reduce the risk of age related conditions and cancer! This was developed by the USDA researchers. For instance: Spinach = 1,260; Clove = 1,078,700. Wow! The number for clove is NOT a typo!
Most Interesting Historical Reference?
Did you know that Oregano is contained in Hildegard’s Medicine Book? Hildegard of Bingen (1098-1179) was known as the first herbalist and naturopath of the middle ages. Her book documented over 12,000 remedies for symptoms and diseases. Wow!

What are the Plant Properties? Antifungal, antiviral, anti-aging, antibacterial, anti-inflammatory, antiparasitic, immune stimulant and antiseptic.

What are the Documented Uses and Benefits of Oregano? Abscess, anthrax, asthma, bacterial infection, boils, bronchitis, bursitis, cholera, chronic pain, cold sores, cough, corns, diarrhea, digestive problems, diptheria, dysentery, Epstein Barr, fibroids, flu, food poisoning, fungal skin infection, gallbladder infection, gangrene, ganglion cyst, gonorrhea, immune system, infections, influenza, lyme disease, oral infection, mouth ulcers, rocky mountain fever, pancreatitis, parasites, pneumonia, radiation damage (internally), respiratory infections, scoliosis, sore throat, strep throat, syphillis, ticks, tonsillitis, tuberculosis, typhoid fever, whooping cough, viral and bacterial pneumonia, viral colitis, arthritis and rheumatism, muscles and vaginal yeast infection.

Of course, I had to share...

Anecdote: My dghtr was suffering from vertigo. Really bad. Has 3 children whose schedules require her chauffeuring services daily. She couldn't drive of course. She went to 3 specials. She had extensive testing, hours long... All the (independent) docs told her there are different kinds of vertigo and the kind she had was the one that isn't easily resolved. The easier vertigo would just go away in a few wks.

My other dghtr had recently discovered a local holistic doc woman who is also a chiropractor and deals with the energy of the body. Vertigo dghtr went to her, in desperation, with nothing to lose. After a while the doc asked if she ate a lot of sushi. Yes. She loves sushi. Well, the holistic lady said she thinks my dghtr has parasites as a result. The stop the sushi thing and to take some supplement that is an anti-parasitic.

Within a wk, the vertigo disappeared. She has been fine since.

I suppose my point is the experts and specialists are great. They look at you from their perspective. The holistic lady sees you as a being with a mind and a body, with energy coursing through you. She thinks outside the box, so to speak.

I believe in that kind of thinking. When I had a slipped disc that herniated (oozing stuff onto sensitive nerve endings surrounding the injury), I was in constant pain. Immobilized. It was 1980. 3 different pp who didn't know one another told me to go see this amazing doc in Manhattan. I lived on Long Island. A friend drove me to the city.

This man who a physiatrist. Dealing with the physiology of the person. Viewing the person as a mind and body. He spoke with me for a full hour. He demonstrated several things to me. And -- I KNEW I would be cured. The orthopedic surgeons had told me I had degenerating disc disease. I wasn't yet 40. Degenerating meant I would only get worse. I began to think of myself as an invalid. Fragile. I moved cautiously, KNOWING pain would strike with each action (reaching, bending, sitting, standing, brushing my teeth...).

The physiatrist was at NYU Medical Center. Head of the Outpatient Clinic. He also taught at Rusk Institute. He showed me how to go back in my mind -- each time I felt the gripping pain (vs the steady gnawing pain). Each time, he said, I would prove to myself that I had just been thinking of something that was stressful (from anticipating pain with a movement, to figuring out what I was going to make for dinner, and so on).

Once I proved that EVERY time, he was indeed right, if I managed to search my mind for the precise thought that I was pondering just before the gasping pain -- I was focused on something that brought about stress.
He calls the disorder TENSION MYOSITIS SYNDROME. TMS. He discovered it as he was a victim of it himself. Within 2 wks the pain I'd experienced for yrs, dissipated...


Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 12-10-2013, 08:34 PM   #52
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Re: Why i take supplements

I think it's important to bump this up -- it's so important to our health.

There are a number of posts from Elaine this past April.

She sounded great, as always. A survivor striving daily to remain one. She knew it is a 24/7 job, even when you're NED.

She was proactive, even aggressive, insisted on a quality from her docs and moved on if she felt they were failing her tests. I am the same.

She believed in integrative medicine of all kinds.

This sudden hospital and nursing home story is so distressing to me. We had no clue.

Was she not wanting to bother us? Did she think as it was not cancer related that it wasn't worth mentioning here? I wish she'd share. I would hope we could have put our heads together and supported her when she needed it most.

She was so inspiring to all of us, wish we could have been for her.

She did everything right. 14 yrs a survivor. Like me. I feel shattered and shaken. But I will rally, as I always do, because I must. We all must!

Love,
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-06-2014, 02:48 PM   #53
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Re: Why i take supplements

"Fate is a future you didn't try hard enough to change."


- Joe Konrath


HERE'S MY UPDATED SUPPLEMENT LIST as of JANUARY 2014, as some have requested:

ALWAYS BUY CAPSULES VS TABLETS. Much easier to swallow. I order from Vitacost.com Excellent product quality, variety to choose from, easy to navigate website, always at discount prices, delivers quickly.



ALPHA LIPOIC ACID 300 AM/PM -- detoxifies liver, anti-oxidant, neurtralizes free radicals, protects cells from damage, can cross the brain barrier, gives energy, RELIEVES MUSCLE AND JOINT PAIN
B-5 -- 500 AM (Pantothenic acid)
B-12 concentrated METHYL CARBALAMIN 1 mg (I take 2
-- ENERGY BOOSTER! ALSO -- Goes to cerebro-spinal fluid to be used by central nervous system. Donates to MYELIN SHEATH that insulates certain nerve fibers!)
CALCIUM 1,000 -- easy to swallow gel capsule -- increases bone density
CARNITINE 500 AM/PM EMPTY STOMACH -- assists in gastro absorption, energizes, lowers triglycerides, RELIEVES MUSCLE AND JOINT PAIN, assists in weight loss
C-1,000 w/bioflavonoids 1,000 -- enhances immune system, reduces recurrence of cancer
CO-ENZYME Q-10 -- 150 AM/PM -- HELPS RELIEVE MUSCLE AND JOINT PAIN, energizes, good for heart, gums and multiple other reasons!
CHROMIUM PICCOINATE -- 400 mcg ( AM EMPTY STOMACH) -- maintains sugar levels, energizes
D-3 -- 50,000 a week. I take 10,000 over 5 days a week. For healthy bones, blocks breast cancer cell growth, meets your body's organs increasing need for D as we age. BE KIND TO YOUR ORGANS. THEY DEPEND ON YOU.
DL-Phenalalanine 500 AM empty stomach -- mood enhancer
DIM-Plus (Diindolylmethane) 100 AM PM
Evening Primrose Oil 1,300 AM/PM -- relieves hot flashing, down-regulates HER2 by binding to extra cellular HER@ receptor, down regulates internal proliferation (I'VE STOPPED THIS AS OF 12/13 AS MY 25 YRS OF HOT FLASHING ALL DAY LONG HAVE CEASED. A CONCOCTION MY HOLISTIC CHIROPRACTOR GAVE ME HAD SOME PORCINE GLANDULAR CONCENTRATE IN IT. WITHIN 2 MNTHS I WAS HOTNESS-FREE, BUT MY TSH FLATLINED! SO I STOPPED THAT AND NOW ON RARE OCCASION TAKE 500 OF EVENING PRIMROSE OIL WHEN THAT 'IS IT HOT IN HERE OR IS IT JUST ME' FEELING COMES OVER ME...)
DR. BEST FOLATE W/QUATREFOLIC 400 mcg AM on empty stomach -- red cell booster,
heart healthy
E 400 AM/PM (heart healthy, helps relieve hot flashes, immune booster, inhibits metastases, decreases tumor burden)
ECHINACEA W/GOLDENSEAL AM/PM for 1 week then alternate with ASTRAGALUS 1,000 AM/PM
FLAXSEED OIL (ORGANIC) 1,000 AM -- anti-cancer, heart healthy, detoxifies, improves brain functions, helps painful, severely dry eyes (since Taxotere '98-'99)
Gingko Biloba Extract 60 AM/PM -- mental alertness (I'S IN A HOLDING PATTERN ON THIS CAUSE OF ALL THE NOISE AND FUSS ON THE NEWS. NOT COMPLETELY SOLD, SO DIDN'T TOSS MY SUPPLY JUST YET.)
GLUTAMINE 500 AM EMPTY STOMACH -- assists in gastro absorption, energizes
LYSINE 500 AM EMPTY STOMACH -- assists in gastro absorption, energizes, lowers triglycerides
RESVERATROL 250 W/Grapeseed Extract 150 AM AND Green Tea Extract -- anti-oxidant, can cross blood-brain barrier and protect brain and spinal nerves against free radical damage, enhances anti-tumor effect, protects liver, strengthen connective tissue, including heart system, supports immune system and slows aging, anti-cancer, HER2 and tumor blocker
NAC (N-Acetyle Cysteine) 600 AM -- supports healthy liver function, rids body of toxins
NADH -5Co Engzyme 1 (AM/PM) 1/2 hr before eating -- relieves chronic fatigue, boosts mental acuity big time
OMEGA 3 -- 2,126 AM/PM -- suppresses tumors, inhibits their growth, may slow or prevent recurrence of cancer, improves blood glucose, good for muscle/joint pain, anti-inflammatory, down regulates HER2 receptor
Phyto Formula -- 1 scoop w/OJ in AM-- promotes energy BIG TIME, reduces chronic fatigue, boosts immune system and increases mental clarity + 1 banana a day!
Potassium Albion 99 AM/PM -- bone healthy, energizes, healthy heart, prevents stroke
RM-10 IMMUNE SYSTEM PROTEN-ZYME MUSHROOM BLEND w/200 SELENIUM -- AM on empty stomach (regulates the immune system, anti-oxidant, detoxifier, reduces recurrence of bc)
ZINC 30 AManti-cancer
TYROSINE 500 AM EMPTY STOMACH -- boosts energy, helps focus and recover from night of poor sleep

FOR MY IBS ISSUES:
GARDEN OF LIFE PRIMAL DEFENSE PROBIOTIC

WOBENZYM-N -- 2 about 1/2 hr before eating (AM/PM) -- THIS IS ALSO AN ANTI-INFLAMMATORY AND AN IMMUNE BOOSTER

TO HELP SLEEP -- ATIVAN (anti-anxiety, helps thoughts bashing into my skull from the inside), AMBIEN (sleeping pill which also depletes the body of natural melatonin!), MELATONIN, THEANINE (natural calmative)

WE ALL NEED TO SLEEP, TO ALLOW OUR BODY TO HEAL AND REPAIR! And to be able to function well the next day!

I truly do hope this helps you my Sisters...
LOVE AND LIGHT ALWAYS,
ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...

Last edited by Andrea Barnett Budin; 02-07-2014 at 10:25 AM..
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Old 02-06-2014, 02:50 PM   #54
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Re: Why i take supplements

I painstakingly highlighted each supplement in yellow. I colored various sections for cohesion.

It seems there's a new format for posting and colors do not transfer anymore!

That is so annoying, I have no words. Our Denise would also be irate, as we both loved to speak in colors...

Sorry.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 02-07-2014, 10:29 AM   #55
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Re: Why i take supplements

I would just add -- be careful to read ALL the ingredients of a supplement.

Though they may say METHYL COBALAMINE -- they may add other ingredients like biotin, folate, etc. which I already take and don't want to increase the dosage.

Too often this happens, that I discover when reading the full ingredients that I do not want to purchase that brand of the supplement I am seeking, cause they have created a whole cocktail I do not want in my regimen.

BTW -- this concentrated form of B-12, which protects nerve fibers and energizes is a SUBLINGUAL cherry tablet. Placed under the tongue, and moved around, it acts quickly. I take it in the AM as I don't want to feel energized beyond a certain hour, which I try to reserve for relaxation, winding down, preparing for sleep.
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 04-03-2014, 12:27 PM   #56
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Re: Why i take supplements

Hi Sisters,

I keep getting PMs asking for my SUPPLEMENT LIST.

Last time I posted an updated version was 2/6 -- in this thread. So please check it out.

And -- what's up with the old way of doing colors in your post??????


Mysterious...

LOVE,
ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 09-24-2014, 02:02 PM   #57
waterdreamer
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Location: Thousand Oaks, California.
Posts: 199
Re: Why i take supplements -- WE NEED TO BE ECLECTIC...!

Hi Andi,
Please would you share with me, the integrative doctors he recommends in the Los Angeles, or Ventura county areas? Thanks, and I found your supplement list - Thanks.
Fern
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 09-24-2014, 07:16 PM   #58
Kkmom
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Re: WHY I TAKE SUPPLEMENTS -- Oops...

Andrea,
Do you take iodine?
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[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 10 Years Out!! - December, 2022
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Old 09-27-2014, 05:10 PM   #59
KathyT
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Location: Glendale, AZ
Posts: 210
Re: Why i take supplements

Wow Andrea this is amazing! I just started a thread on what vitamins to take to prevent recurrence and then found this! How kind and wonderful of you to take the time to post all these vitamins. I have made my list and plan on doing this every day to prevent any recurrence. I know it will be hard to do but will be worth it
Thank you!!
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
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Old 09-29-2014, 01:22 PM   #60
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: Why i take supplements

Hi Kathy. So glad you found this! Saved my life! Literally...

We need to fight back against Assembly Line Medicine. Integrative Oncology is the answer.

I used Dr. Mitchell Gaynor in NYC. He alters the lives of 4th stagers. Boosts their immune systems and gets you firing on all cylinders. Supplements help create miracles, my Sisters!

Wish I could remember the ones in Cali I came upon over the yrs, Fern/Waterdreamer. If you PM SoCal Girl she might recall. I e'd her all the info at the time. Searched through my piles and checked my puter files, such as they are, and can't come across them. If I do, I will alert you, and any and all who are interested. Just keep googling, or goggling as I like to say. The ones I came upon I actually contacted, out of curiosity. One guy was so on my page I wished I could meet him!

Listen to your Inner Voice ladies. Not the voice in your head. It can be so negative. But your Spirit, your Guardian Angel has eons of wisdom and totally adores you. That sacred entity will guide and protect you. You can trust that Voice!

I would advise y'all to search around, ask around, network. You can come upon some great alternative care pp.
************************************************** *************************
I do NOT take iodine, KK. It kind of scares me. Though Rachael on this board is very knowledgeable re this.

************************************************** ********

Love you,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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