Why i take supplements

[Andrea Barnett Budin]

Hi Cat,

I hear you. I was just where you are now in '98 (when my 4th stage bc spread throughout my liver). After my initial dx/mastec/tram flap reconst ('95) I received loads of beautiful flowers, heaps of books and an outpouring of love and support. I was 50 yrs old. Way too young to die, I kept thinking.

I'd read Dr. Mitchell Gaynor's book (one of the stacks of books I'd received). It was 5 AM and I'd gone into the bathroom to read, not to wake my husband. With the lid down, I sat and read. On the 1st page I was covered in goosebumps. I KNEW I WAS GOING TO LIVE! Dr. Gaynor is an integrative oncologist, including meditation, guided imagery and sound therapy. He is an expert in all and most especially in nutritional supplements. I call him my nut onc.

He is not your average brilliant onc (I had accrued about 5 between NY and Fla where I lived at that time).

He totally believes in the mind/body connection -- WHEN THE MIND SPEAKS THE BODY LISTENS is a thread I started, you may want to find (if it isn't on page 1 -- it's on page 2 of the threads). I'd had personal experiences with 2 yrs of debilitating back pain, when my kids were young and really needed me 24/7. Also when I had a kidney stone the size of Texas that I refused surgery to remove and used my mind. And gallons of water to help move it along. I personally experienced the power of our minds and it was AWESOME!

So on tx in '98 my oncs all said -- wait to take the supplements -- which mainstream docs just don't know much about and don't trust. I repeated this to my nut onc and he said, rather passionately -- NO! DURING TX IS THE MOST IMPORTANT TIME, THE TIME YOUR BODY MOST NEEDS HELP TO COPING WITH THE SIDE EFFECTS OF TX!!!!

My Inner Voice told me that made perfect sense. I tend to listen to my docs direction, but in this case, with my gut feeling so strongly against what they were saying -- and it being MY LIFE we were talking about -- I bravely chose to take the long list of supplements, every one, that my nut onc recommended.

I KNOW it helped me get through the ravaging effects of Taxotere! I KNOW it helped me stop the shingles I acquired about 1 mnth into that tx (my immune system being so compromised). Generally shingles can last mnths, even yrs. I was firmly told I COULD NOT RECEIVE CHEMO WHILE I HAD THE SHINGLES. I knew I had less than a 15% chance of living for a year, 5 yrs tops. I planned on living till I was 100, and in good health with a sharp mind!!

I took more supplements targeting the Shingles virus. And in 10 days I returned to my oncs office. How are you doing?, he smiled and asked congenially. I'd known him for 3 yrs and we were close. He had 3 dghtrs and empathized perhaps even too much w/my situation(s).

I'm good, I said. He almost laughed I could see. He said, Let's have a look. I was seated on the exam table. My husband in a chair by my side, as always. I lifted my shirt. My onc circled me, checking out my torso, and was amazed. You're right! All the pustules have scabbed over and healed up. You can have chemo today if you want.

I wish you the very best, Cat. I almost said best of luck. But I believe we help create our own luck with knowledge, insight, unwavering fortitude, positivity, self talk (talking to your body and leaving commands for it to get its' act together), an open mind and an open heart.

I am sending you Love and Light. Please keep us all posted on your journey. Sharing is what this fabulous site is all about. We are here to help one another and grow...

Andi

[Cat]

Andi, Thank you so much for your positive input and support. I became teary eyed when I realized how long you have been going strong. It does make a lot of sense when you put it that way. I think I have tolerated the chemos I have been through quite well and have missed only 1 tx due to a staph infection and fever so I wonder if it has something to due with my attitude of "it's not my time". I hope so. I have always taken eating right and getting lots of water seriously even though I "supplement" my healthy food with some "junk food" too! My onc has come to respect my instinct so I will be looking for Dr. Gaynor's book and hopefully I will get goosebumps too. Thank you again

[Andrea Barnett Budin]

Keep listening to your Inner Voice. That's your Spirit talking to you. It is full of eons of wisdom and it wants what you want. It loves you more than you love yourself. So trust it. Stay in touch with it. Connect with it. Align yourself with that "Knowing". It is the True You. Many call this Inner Voice their gut. Their instincts rising up...


If you KNOW a thing (deep down at your core) -- it will be. IOW, if you KNOW you're going to fail -- you are sealing your destiny. Whereas, if you KNOW you can and will prevail -- you are calling your desired goal to you!!!!

Your gut is your Inner Voice. It's your SOUL! It guards and protects you. It nurtures and sustains you. LISTEN TO YOUR INNER VOICE. It is an eternal sacred entity that is always with you! You are never alone. Never. (I talk to mine all the time!! Yes, I talk to my body, and I talk to my Spirit -- at the very Essence of my beingness.)

And Dr. Gaynor understood this as I read his book, Healing Essence. I couldn't even make sense of the title when I read it in 1995. Now, I see! Your Essence is your Spirit. Your Essence is alive and getting well. Believe in its power!


Sending Love, Light and Positive Energy. I live in the Land of Yes! Join me, please...



Andi

[conomyself]

I like to visualize too...

I picture my husband and me at age 100 living in the old folks home with our iPads

I try to really imagine it in detail every day...

Thanks for all your great posts Andi, I love to read them!!

Rachael

[Andrea Barnett Budin]

Guided imagery and affirmations or mantras are amazing tools. Essential to wellness.

I tell myself every day, throughout the day -- I AM STRONG, BRAVE AND DETERMINED. Even when I was scared to death, felt vulnerable, frail and emotionally shaken, I did know I was/am stubborn as all get out. The rest were goals. I drummed them into my brain, which communicates with my body all day long, and takes its cues from the mind's thoughts, images and emotions.

I would add, HEALTHY AND WELL. And after a while, I included -- NO MORE CANCER...!!!!!!!!! To be perfectly clear.

Stating my Intention and Expectation emphatically. Never wavering. Okay, yes, I had my weak, scary moments, naturally, but I did breathing, in and hold and out, over and over, to calm myself. And replaced my OMG I could die. I could be missing at all the holidays. My family gathered and me absent. Then I got myself together and literally saw myself there, for many yrs to come, laughing, loving, hugging, eating (of course) and being full of gratitude.

Every day, I look up and say, Thank you for my life. It brings me watery eyes as it comes from my Soul, my core. I know how blessed I am. I never get cocky. Never take anything for granted.

And I remain all along on maintenance therapy. 10 yrs of Herceptin. And 14 yrs of supplements twice a day, every darn day. (I've been off H for almost 5 yrs. My now annual scans due in June. Along w/my now ev 6 mnths bloodwork.) I expect to remain stable.

Wishing you all the same.

Love,
ANDI

[Andrea Barnett Budin]

What is Alpha Lipoic Acid?

Alpha lipoic acid is a fatty acid found naturally inside every cell in the body. It's needed by the body to produce the energy for our body's normal functions. Alpha lipoic acid converts glucose (blood sugar) into energy. Other names for it include lipoic acid, thioctic acid, and ALA.

Alpha lipoic acid is also an antioxidant, a substance that neutralizes potentially harmful chemicals called free radicals. What makes alpha lipoic acid unique is that it functions in water and fat, unlike the more common antioxidants vitamins C and E, and it appears to be able to recycle antioxidants such as vitamin C and glutathione after they have been used up. Glutathione is an important antioxidant that helps the body eliminate potentially harmful substances. Alpha lipoic acid increases the formation of glutathione.

Alpha lipoic acid is made by the body and can be found in very small amounts in foods such as spinach, broccoli, peas, Brewer's yeast, brussel sprouts, rice bran, and organ meats. Alpha lipoic acid supplements are available in capsule form at health food stores, some drugstores, and online. For maximum absorption, the supplements should be taken on an empty stomach.
Why People Use Alpha Lipoic Acid

1) Peripheral Neuropathy

Peripheral neuropathy can be caused by injury, nutritional deficiencies, chemotherapy or by conditions such as diabetes, Lyme disease, alcoholism, shingles, thyroid disease, and kidney failure. Symptoms can include pain, burning, numbness, tingling, weakness, and itching.
Alpha lipoic acid is thought to work as an antioxidant in both water and fatty tissue, enabling it to enter all parts of the nerve cell and protect it from damage.
Preliminary studies suggest that alpha lipoic acid may help. In one of the largest studies on the use of alpha lipoic acid, 181 people took 600 mg, 1200 mg or 1800 mg of alpha lipoic acid a day or a placebo. After 5 weeks, alpha lipoic acid improved symptoms. The dose that was best tolerated while still providing benefit was 600 mg once daily.
2) Brain Function

Alpha lipoic acid can cross the blood-brain barrier, a wall of tiny vessels and structural cells, and pass easily into the brain. It is thought to protect brain and nerve tissue by preventing free radical damage.

FOR MANY (INCLUDING ME) THE COMBINATION OF CO-ENZYME Q10 (150 MG AM/PM), L-CARNITINE (500 MG AM/PM AND ALPHA LIPOIC ACID (300 MG AM/PM) -- HELPS PREVENT ACHES AND PAINS, NERVE DAMAGE (FROM CHEMO)...



This 3 supplement combo is like a secret recipe -- for deep muscle and joint pain and for all the above reasons.

HERE'S TO YOUR HEATH...!!!

Love,
Andi

[Andrea Barnett Budin]

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

[Andrea Barnett Budin]

fyi -- CONOMYSELF is Rachael and she is fab!

Dr. Gaynor's book, Healing Essence is on Amazon! I suggest you grab it.

Cat, how are you???

Appreciate all the kind words. I put a lot of time into all my posts and all my heart so it is encouraging to me that it I am helping/uplifting some...

Been busy celebrating Life. Just turned 70...! Yikes. I was 50 when first dx. And well, you can see my tale below... May it inspire you! That's why I share.

Sharing is what Life is all about. We need to share our feelings and our experiences, to help one another.

Love,
Andi

[bmorr7]

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

[Andrea Barnett Budin]

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

[bmorr7]

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

[Andrea Barnett Budin]

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.

[bmorr7]

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?

[Andrea Barnett Budin]

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

[Andrea Barnett Budin]

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

[Ellie F]

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

[Andrea Barnett Budin]

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

[Andrea Barnett Budin]

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

[Andrea Barnett Budin]

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,

[KathyT]

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!!