Gaining Control

[Andrea Barnett Budin]

For all those who have asked and tried to find my thread -- GAINING CONTROL OF YOUR LIFE -- HERE IS THE LINK...

Hope I have this right!

http://her2support.org/vbulletin/showthread.php?t=30419

WISHIN ALL MY SISTERS AND BROTHERS A LONG LONG DANCE WITH NED...
Andi

[Andrea Barnett Budin]

This is my first ever BUMP! But I just posted reference to this and often get messages asking about this so -- BUMP!!

Andi

[PinkGirl]

Hi Andi

In the other thread about Evening Primrose Oil, did you mean that you
used to worry about taking it for hot flashes, or did I misunderstand you.
If yes, why were you not sure it was okay?

[Andrea Barnett Budin]

Yes, Pinkie, Oncs are uncomfortable w/supplements in general, as there are no courses in this in our medical schools, much to my astonishment.

Especially, my 5 oncs had reservations (excuse me, make that 4 oncs) my 5th nut onc (nutritional oncologist) knows his stuff, and assures me I am not making missteps. Still, I was slightly intimidated by the 4 who have reservations re Evening Primrose Oil, Flaxseed Oil, Black Cohosh, Isoflavones from red clover (phytoestrogen -- from plants). Gaynor/nut onc says a millionth or more of regular estrogen. I take those in particular for hot flashes, which I am a prisoner of.

But the nutritionist at the Cancer Center I go to had come to me w/my list. I provide ev one of my docs that list from GAINING CONTROL thread on this board -- alphabetical, w/dosage and reason for taking. So the nutritionist came to me alarmed about the ones I mentioned. You know if you had bc (I'm sitting in the chemo room in my recliner hooked up to my infusion!) -- you shouldn't be taking these!, she said alarmed. Well, I responded I would double check w/my nut onc, but I am aware of some studies that say that some of these are actually beneficial for bc. She made me promise to do so soon and report back to her. I did. I got the green light. However, it takes a degree of faith (in this doc and my readings) and courage to proceed anyway... We're talking about my life, after all! AND, we're talking about my QOL, which after 23 yrs has become poignantly paramount!!

There are many conflicting opinions out there re progesterone creams being necessary vs dangerous and so on. So I have read Dr. John Lee's books and am now reading Dr. Graeme Williams book on the topic of hormones -- the good and the bad and the need to BALANCE your estrogen w/low progesterone -- which can cause:
diet and exercise resistant weight gain
breast tenderness
headaches
anxiety and tearfulness/mood swings
hot flashes
insomnia
foggy thinking
reduced libido
fatigue
depression

All due to estrogen dominance that is unopposed. I can relate to most of the list! I would not take synthetic one-dose-fits-all meds but natural progesterone cream could correct these things.

To quote Williams, WE CANNOT BECOME WHAT WE NEED TO BE, BY REMAINING WHAT WE ARE.

He says this hormonal imbalance is at the root of: Heart disease, type 2 diabetes, breast and prostate cancer, obesity and headaches. It calls this hormone havoc the modern day equivalent of cigarette smoking. Its impact on society being that great.

A lot to contemplate, no?!

Andi

[PinkGirl]

Hi Andi

I am in the big city for a few days so I'm going to look for
some of these supplements that I can't find at home.
They will be a much better price here. I can't even get
some of those "different" teas at home. I need something
to wake me up right now

[Sandy in Silicon Valley]

Hi, Andi & others interested in alternative/ supplementary herbs & nutrition,

I personally shy away from taking any kind of supplements, unless recommended by my oncologist, who works as well as a lab researcher.

This, ever since I was told very emphatically to get OFF Vitamin E supplements, which my primary physician had recommended for hot flashes, before my first craniotomy operation - since VitE can also act as a blood thinner, and cause excessive bleeding during/after surgery.

So I avoid over-eating soy products (tofu, edamame, soynuts, etc.), and take no supplements whatsoever. My oncologist mentioned that some supplements can interfere with the efficacy of radiation and/or chemo treatments as well.

Here's a website that seems research-based and legitimate, that espouses evening primrose oil as a drug-like preventative for breast cancer:

<http://www.news-medical.net/?id=14257>

It mentions that evening primrose oil works especially against HER-2/neu+++ bc, which would seem to apply to those who read posts on these forums.

However, my understanding is that active bc tumors are made up of a combination of different sub-types of bc cells: some HER-2/neu+++, some hormone-receptive, some triple negative. Which of those cells proliferate depends somewhat on their native strength, as well as the antagonist agents carried by the host's bloodstream - such as anti-hormonals, Herceptin, Tykerb, a variety of chemo agents, the host's immune system, etc.

What I think might be the risk, in taking evening primrose oil along with Herceptin or Tykerb, is that the hormone-receptive cells that may be the less-robust bc type in one's bc/bcmets, might become stronger and multiply more vigorously, once the HER-2/neu+++ bc cells are rendered inactive with effective Herceptin/ Tykerb drug therapy. If that were to happen, the phyto estrogens such as soy, flaxseed oil and evening primrose oil might actually promote cancer cell growth - the fact is, the research "jury" is still not in.

The following is from Wikipedia: "A 2006 review article stated the opinion that not enough information is available, and that even if isoflavones have mechanisms to inhibit tumor growth, in vitro results justify the need to evaluate, at cellular level, the impact of isoflavones on breast tissue in women at high risk for breast cancer. The generally accepted position on this topic is that phytoestrogens may be beneficial for healthy women, however, women with cancer history should be aware of existing risks and avoid consumption until more information is available."

(((hugs)))
Sandy in Silicon Valley

[Sandy in Silicon Valley]

Sorry, I left out the website for the medical referral to evening primrose oil:
<http://www.news-medical.net/?id=14257>

(((hugs)))
Sandy in Silicon Valley

[AlaskaAngel]

What continues to be missing for all of us after decades of study is the wisdom, knowledge, and experience of someone with training that deals with the entire body instead of limited to oncology or gynecology, etc. -- an endocrinologist who can help analyze the hormonal balance throughout the body, including the natural changes of aging on the endocrine system and any unnatural changes. Even better would be someone trained as an endocrinologist with training in genetics. Endocrinologists are trained to understand the metabolism and dietary problems as they deal with problems like diabetes and thyroid imbalance, and we are talking about edible supplements and their effects here, aren't we?

AlaskaAngel

[Gerri]

Sandy,

Your link never did show up, see if you can post it again. Here is a link to a brief article in CURE Magazine warning about the use of unregulated supplements and also certain vitamins by cancer patients. Good advice.

http://www.curetoday.com/currentissue/departments/food/index.html

[Andrea Barnett Budin]

Yes, AA, I have wended my way to an endocrinologist, seeking relief my incessant hot flashes, in utter desperation. Upon finding a gem, I suddenly realized -- 11 yrs in bc -- that every one of us should have one of these! It is a whole fresh perspective of the body and its processes. I had estradiol and testosterone and a whole panel of NEW tests when I thought I'd seen it all. We can always learn something new. Every day, hopefully. If we are open.

I have just finished a book called UNLOCK YOUR HORMONES by Dr. Graeme Williams, 30 yrs in practice. It is eye-opening. My NY nutritional oncologist who I affectionately call my nut onc/guru is well-versed in supplements, his area of specialty. From him I have learned meditation and guided imagery, which Steph elucidates about in depth. The benefits of these are invaluable. Mainstream, cutting edge oncs are given no education in this area in our medical schools, much to OUR detriment I believe. It is ancient (Eastern) wisdom in modern day terms. A meeting (finally) of the East and the West -- that is proving to change, and save, lives. Praise be! Treating the whole person (holistic medicine) is so obviously necessary, rather than addressing symptoms of disease and dysfunction. Finding an expert who covers this plus oncology and nutrition, including supplements, which remain an enigma, unregulated and yet full of promise.


As many PM me asking me for MY LIST, I have tried to provide my information -- specifically recommended for me with my pathology, from my oncological nutritionist whose expertise is in INTEGRATIVE ONCOLOGY. This includees: Supplements, meditation, guided imagery and the like. He is quite a remarkable and learned man who updates my list as often as I would like. I now visit him annually, yet have access to his knowledge by phone or email throughout the year. I am blessed to have been led to such a gem, a fountain of information. I sing his praises often... I have posted the link to my 11/5 thread, GAINING CONTROL, above...
Andi