To "supplement" Or Wait...

[Andrea Barnett Budin]

Most mainstream oncologists say NO to supplements in general, and especially while taking chemotherapy. Even top notch, cutting edge oncologists know too little re supplements and are fearful of them.

Their is another view, I want to share. I believe my 8 years of the miraculous drug Herceptin, mediation, guided imagery and my SUPPLEMENTS (taken as recommended by my oncological INTEGRATIVE MEDICINE specialist who is an expert on supplements) have saved my life and brought me to be NEMD/STABLE.

Dr. Gaynor had me on supplements -- to boost my battered immune system, keep my heart strong, help fight off free radicals, help detoxify my liver, protect cells from damage, give me energy, cross the brain barrier and so on -- WHILE UNDERGOING CHEMOTHERAPY (after metastasizing into the my liver with multiple tumors). Please read my saga in my signature. '95 -- 4th stage ILC + 2 nodes and then in '98 (w/the discovery of the Her2 gene and my pathology showing an 80% positive finding + the PERFECTLY TIMED availability of Herceptin -- I thank God for helping to sustain and enable me and bringing me to this day! I feel this message is one to consider. If you live in the New York City area, or are able to get there, you can meet with Dr. Mitchell Gaynor yourself -- for a most unique oncological take on supplements and their benefits.

I pray for all my sweet Soul Sisters. You are all wonderful women warriors. I wish you strength and courage, health and wellness with all my heart... ANDI

[mslinda]

Andi:
I have printed out all the suppliments that you take and the next time I see my oncologist, I will ask her about them. I do take suppliments, but not near that many. It is hard sometimes to get down what I now take. But my oncologyst is open to these. She put me on Vit. E for the liver problem that I seem to have, and also Red Rice Yeast for my cholesterol, as I cannot take lipitor, etc. I use high dosage Vit. C, Alpha Lipoic Acid, and of course a good multi. That is all except for my regular meds. I am hoping that I am doing something right. Trying to eat a diet of mostly fruits, veg's and whole grains. Since chemo, I can't stomach chicken or beef. You take care.

I still glorify God each day for bringing me to the place that I am today.

Linda Nance
S. Mississippi

[R.B.]

MSlinda

You might like to look at the posts on balancing the omega threes and sixes, fish oil, flax seed etc. You can search by clicking on search above if you have not found it. It took me a while!

This has some useful info.

http://her2support.org/vbulletin/sho...ght=greek+diet

You might find this post below useful too. Print out the links and have a look at them. IF you think they are instructive you could always print them out and take them along.

http://her2support.org/vbulletin/sho...enneth+Conklin

Fish oil is more powerful than most appreciate. It can cause blood thinning. Some have issues with flax seed and oil. Please talk to your medical advisor about dietary change

RB

[TSund]

Andi,

I would be curious as to what you take, how much, and when. (Do you know which supplements your doc would NOT recommend during chemo?)

He sounds like a great doctor. Has he explained the rationale behind the various supplemental supports?

Factual info would be really helpful for those of us who don't have access to NYC.

Thanks!

TRS

[hutchibk]

There is also a great naturopath/nutritional doc in Seattle named Dr. Dan Labriola. He has spent over 20 years doing the research about what supplements can and can't be used during chemo. I consult with him a couple times a year to be sure we are on track, and he in turn consults with my doc before we add anything in... and I talk to him each time I change treatment. Each chemo can have different interactions and/or interference from certain supplements. Tykerb/Xeloda side effects are worsened by folic acid, so it shouldn't be taken when on this combo. Some chemos require a 'protected zone' before and after a treatment, so there is no interference or reduction of effectiveness. (such as antioxidants and amino acids for 24 hrs prior to or 5 days after certain types of chemo treatments, and any substance that contains aluminum (certain antacids) when being treated with carboplatin, for example)

Be wary of what supplements or natural treatments you combine with your chemo, hormonal or targeted agents....

When carefully dosed and closely monitored, supplements and natural dietary additions can be very theraputic and helpful. Just be sure you are consulting with someone who knows what they are doing!

"Complementary Cancer Therapies" by Dan Labriola, N.D.

[TSund]

Brenda,

Thank-you for the great message. It is enormously helpful. Wish we lived in Seattle! I'm going to try to order this book.

I don't think even my doc's nurse knows this about Carboplatin, which is one of the 3 drugs Ruth is currently on.

I think you were the one who mentioned bentonite clay, which Ruth is using for the lighter diarreha. I also think it is good for pulling toxins out of the body without interfering with the chemo. She's been using it almost every day. Is there any restrictions on this one?

TRS

[TSund]

Ordered a copy, Half.com (where I order all my books) has it cheap!

This is dated 2000, wonder if he is plannning an update...

TRS

[MichelleH]

Andi,
I too am curious on what you take for supplements & herbs, especially for immune support & liver detoxification. And also curious of what kind of special diet you might be on (if any).
I googled Dr Gaynor and found he is quit the Dr. Lucky for you to find him!
I am also curious has anyone heard is there anything herbs or supplements that will increase or decrease the effects of Tykerb.

You are definently a BC survivor role model. Keep up the good work!

Hoping to find NED.
Love,
Michelle

[TSund]

I think as this conversation is underway it is important to distinguish ER+ from ER- and to consider this with the supplement discussion.

There is a hugely differing body of opinion on the pro/cons of phytoestrogens on bc, esp with the ER+. It throws a whole other monkeywrench in the works.

Thanks,

TRS

[hutchibk]

I don't live in Seattle, I live in Texas. But I consult with Dr. Labriola by phone! It's not terribly cheap, but it's not really expensive either. And he has two other doctors who have worked and researched with him for years who I also consult with if he is not around (he travels alot around the world to speak and do research with other doctors...) Dr. Bufy and Dr. Pratt, who are also wonderful!

I too wondered about an update to Dr. Labriola's book, and I know that his research is ongoing, but the book is a great base-line reference guide, I still refer to it all the time. It is still vital and valid... the landscape of chemos and mono-clonal targeted agents is changing so quickly, I guess even a new updated edition would be outdated before it hit the shelves! I wouldn't doubt that he has it in the works though.

I got the suggestion about Bentonite Clay from Dr. Labriola/Dr. Pratt... if you decide to consult with them, ask about any bentonite restrictions. You can also try Carob powder for diarrhea maintenance... Dr. Pratt said some of her patients have had success with it as well.

Call their office...
___________________
"Dan Labriola, N.D., at Northwest Natural Health Specialty Care Clinic in Seattle provides specialized care for specific diagnoses such as cancer, heart disease, hepatitis, diabetes, neurological diseases, and others. They work with patients who need or want to stay with conventional treatments and uses naturopathic approaches to provide nutritional supplementation to help reduce the side effects of chemotherapy and other harsh treatments. Five keys to his program are: balanced nutrition, botanical support, lifestyle adjustments, avoiding toxins, and psychological support. They also have a good program for cancer prevention. They will communicate directly with your oncologist or primary care provider to coordinate your care."

There is a write up on this physician in Burton Goldberg's book The Alternative Medicine Definitive Guide to Cancer.

Northwest Natural Health Specialty Care Clinic
Dan Labriola, N.D.
5343 Tallman Ave, NW Suite 208
Seattle, WA 98199.
Tel: 206-784-9111
http://www.nwnaturalhealth.com/

[Andrea Barnett Budin]

Ladies, This list was designed for me -- with my particular pathology. I am NOT a medical professional. (As I think Marie says, I only play one in real life!) I AM a professional patient if ever there was one (since '95) and have read extensively for a layperson's understanding of Supplements. The Internet is a fabulous tool for information, as you all know.

I "met" Dr. Mitchell Gaynor when I read the first page of his book, HEALING ESSENCE. It gave me goose bumps and changed my life (in '98 w/mets). It was in a stack sent by caring friends. I would take one off, reject it, and move on. Hard to concentrate when you're staring at your own mortality. Then one early morning of sleeplessness, at 5 AM with pitch blackness outside, I went in to my bathroom, closed the door, not to disturb my husband, turned the light on and put the toilet seat down. I sat and began to read. IT TURNS OUT THAT THIS BOOK WAS GIVEN TO ME BY MY BABY DAUGHTER (now thirty something). It led me to Dr. Gaynor's door. If you GOOGLE -- DR. MITCHELL GAYNOR you will learn much about this remarkable healer, running an INTEGRATIVE ONCOLOGY CENTER in Manhattan. I love this man and was surely led to him with some kind of divine intelligence.

My spiritual journey has assisted me along w/all listed in my signature. Feeling mortally endangered I was moved to draw on every resource I possessed. I sensed a great force within me. Going deep within myself, meditating and using guided imagery, I tapped into the mindbody link, knowing it was TRUE. My emotions became quelled as I soared up into the Universe and became The Witness. As The Observor I connected with and became MY SOUL, my True Self! Healing powers were awakened in me, as I called upon the Universe to conspire with me to bring healing energy to my body. I had seen the look on the faces of the doctors and nurses. I had been hugged by a nurse at the outset. I felt her chest heave as she fought back tears, having read my chart. I WILL PRAY FOR YOU, she whispered into my ear. I KNEW I was in big trouble. Peeks at bc bks confirmed my suspicions. My prognosis was beyond poor. So, instead I turned to HEALING ESSENCE, Wayne Dyer's books, Seat of the Soul, The Power of Now, slowly making my way to joy and harmony and wellness despite it all.

I opened my heart to discover a whole new world. The Spiritual Realm that touches us daily with the power of Guardian Angels at our side. I identified myself as a Spiritual Being, with a mind and a body. I now see others the Souls they truly are. I turned my back on helplessness and despair and embraced instead my WHOLENESS. My Oneness w/all that IS. My personal crisis became a spring board to fresh Awareness, epiphanis and perceptual alterations. I believe my wellness is more than miraculous. It includes the expertise of my surgeons and oncologists, my supplements boosting me up in every which way from the onset, and my awakening to a new reality that is sublime and empowering!!!

This is precisely what I wish for every one of you, my sweet Soul Sisters. I offer you my list below to be considered, based on your own pathology. I did not include the supplements I take to fight off my 22 yrs of suffering from hot flashes. They are bold, and approved by Dr. Gaynor, but I hesitate to offer them as they are so controversail (including phytoestrogens, which some studies say can better bc outcomes and others fear). Sending much loving, healing energy to all you wonderful women warriors with the courage of legions... ANDI

STAY STRONG, BRAVE AND DETERMINED. AND NEVER STOP BELIEVING IN YOUR OWN POWER! OOOOO XXXXX


VITAMINS/SUPPLEMENTS:
Multi (AM)
Asidophilus (AKA Lactobacilius Asidopholus) Probiotic, friendly bacteria/30 billion
viable cells per capsule, maintaining healthy microflora) (major uncontrollable all
day gas relief)
Alpha Lipoic Acid – 300 (AM) (PM) (detoxifies liver, antioxidant, neutralizes free
radicals, protects cells from damage, can cross the brain barrier, energy)
Biotin – 5 (AM) (healthy hair/nails)
B-6 (P5P50 activated B-6) (AM) (healthy heart)
B-12 – 1000 sublingual (AM) (boosts energy)
C-1000 w/Bioflavonoids 200/Green Tea 299/Proline 300 (AM) (enhances immune
system, reduces recurrence of cancer)
Calcium – 600 w/D 400 (2 AM/1 PM) (increases bone density)
Chromium – 400 mcg (PM) (boosts energy, maintains sugar levels)
Co-Enzyme Q-10 – 150 (AM/PM) (enhances immune system, prevents cancer cell
proliferation,energizes, healthy heart, good gums)
D-3 – 1000 (AM) (bones)
DL-Phenylalanine – 500 (appetite suppressant, mood enhancer)
DIM-PLUS (Diindolylmethane) – 100 (AM/PM) (metabolizes estrogen) GOOD FOR "ME" -- as ER/PR-
E – 400 X 3 ( 2 - AM) + (1 - PM) (healthy heart, relieves hot flashes, immune booster,
inhibits metastases, decreases tumor burden)
Echinacea – 300 w/golden seal – 100 – l wk on/1 wk off (staggered w/Thymulus)
(AM/PM) (immune booster)
Thymulus – 750 w/Astragalus – 250 (AM/PM) – 1 wk on/1 wk off (staggered
w/Echinacea/goldenseal) (AM/PM) (immune booster)
Exhilarin – 615 Holy Basil Leaf Extract, Ashwagunda Root Extract (AM/PM) (relieves
hot flashes, ENERGIZES)
Fennel (Seed) – 480 X 1 AM/1-2PM) (relieves gas, helps rids intestinal tract of
mucous)
Flaxseed Oil – 1000 + (AM/PM) (heart healthy, anti-cancer, detoxifies, improves brain
function, helps painful, severely dry eyes since Taxotere ’98) NOTE: I AM
ER/PR-!
Ginkgo 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, protect
liver, strengthen connective tissue, including heart system, supports immune
system and slows aging)
Green Tea Extract Reservatol – 200 (PM) or drink 3 cups daily (anti-oxidant, heart
healthy, anti-cancer)
L-Carnithane Fumerate – 500 (AM – empty stomach) (amino acid, assists in gastro
absorption, energy, heart, assists weight loss)
L-Glutamine – 500 (AM – empty stomach) (amino acid, assists in gastro absorption,
energizes)
L-Lysine – 500 (AM – empty stomach) (amino acid, assists in gastro absorption,
energizes, lowers triglyclerides)
Magnesium – 200 and Potassium – 545 (PM) (bone healthy, helps sleep, regulates
bowels, energiezes, healthy heart, lowers blood sugar and triglycerides,
raises good cholesterol, prevents stroke)
NADH – 5 Co Enzyme 1 X 2 (AM/PM) (on empty stomach, 1/2 hr before eating)
(relieves chronic fatigue/ENERGIZES)
OMEGA 3 -- MEGA EFA (OMEGA-3 EPA (800) & DHA (400) (AM/PM) (suppreses
tumors, inhibiting their growth, may slow or prevent recurrence of cancer,
improves blood glucose)
PERFUSIA SR (L-Argenine) – 350 (AM) (EJECTION FRACTION elevator, strengthens heart)
Phyto Formula – 1 scoop of soy lechitin powder. Spirulina barley grass powder, tomato
powder, wheat grass powder + multiple powdered anti-cancer lycopenes and
antioxidants … in 8 oz potassium rich OJ (relieves hot flashes, promotes ENERGY
BIG TIME, boosts immune system and mental clarity, helps regulate bowels)
+ 1 banana a day for potassium/strength/energy
<O</ORM-10 Immune System Proten-zyme Mushroom Blend – 1165 (w/Aloe Vera Juice 36 +
Cat’s Paw Bark 305 + SELENIUM 200) X 2 (AM/PM – empty stomach) (regulates
immune system, anti-oxidant, detoxifier, regulates/stimulates immune system,
heart protector, anti-inflammatory, reduces recurrence of bc)
Zinc – 30 (PM) (anti-cancer)

[Andrea Barnett Budin]

Oops. I forgot. NAC (above) -- 600 mg. (AM) (supports healthy liver function, rids body of toxins). + Acidophilus -- helps promote healthy bowel function.

FYI, since I was asked: As for diet -- I have IBS since '98/Taxotere. Took Wobenzym N (2AM/2PM) from '05-06, as recommended by Gaynor for diarrhea divas. Made Life 90-95% better. Then when put on Effexor Sept '06 -- to help relieve constant hot flashing, living in a sauna w/a wet suit on that is 2 sizes too small. Wanted to peel my skin off, escape any way I could, even out a window... Effexor eradicated IBS, but not the flashing. Good news/bad news.

So, IBS acts up if I eat almost all fruits, raw or cooked. (Can have OJ and banana and do every day.) Eat salads, mushrooms, cuke, lots of tomato, onions, garlic, some craisons, chick peas, EVOO (extra virgin olive oil NOT heated), balsamic vinegar. Lots of salmon and chicken (wild), sea bass. Gaynor says avoid fish that are large (ie tuna) as they have been more exposed to mercury. Eat little beef. Some carbs -- pasta, baked sweet potato, some butter. Asparagus, broccoloi, cauliflower, carrots. Eat eggs occasionally. Avoid sauces. NO desserts ever, not even 1 bite.

Avoid fried anything. Splurge eating baked potato chips. Haven't had sugar since '04 (recovering chocoholic). Seems sugar can be a trigger food for IBS and I hear, cancer loves sugar, so I can live without it, I figure. Never add salt. Know it lurks however.

Eat turkey breast, grilled chicken cutlet and aslice of low-fat cheese. Have organic no fat milk w/chai tea. DRINK 10-12 glasses of water a day. AM UPPING THAT TO 16 glasses a day. BUN a bit high. Pee almost colorless, but... Enjoy wine w/dinner, but NOT when on hard core chemo.

Whole wheat seems to be a trigger food for IBS for me, along w/ALL nuts, corn, cream, all things greasy, anything related to cabbage family (brussel sprouts and artichokes included). Supplements help keep me nourished properly, as I can't do strawberries, blueberries, any berry, etc. And when on chemo I had a truly poor apetite and wasn't eating properly to be sure. Pecked. With effort. But drank 10 glasses of water every single day. Force fed. Flushes out the toxins, as I see it. Good for skin. Keeps you from dehydrating, especially w/IBS (irritable bowel syndrome).

FEEDBACK PLEASE. What works for you?????????????? Here's to GOOD HEALTH FOR US ALL!!!!!!! A toast to my Soul Sisters... ANDI

[Barbara H.]

Hi Andi,
Is it still possible to get an appointment with Dr. Gaynor?
Thanks,
Barbara H.

[Andrea Barnett Budin]

Yes. Any one can get an appointment. DR. MITCHELL GAYNOR -- GAYNOR INTEGRATIVE ONCOLOGY -- Nutrition/Diet/Supplements
331 East 65th Street, New York, NY 10021 -- 212) 410 - 3820

Say hi to Denise for me. She's great too. She's like a friend. Full of information and extremely helpful and lovely.

Let us all know your impressions, etc., please!