View Single Post
Old 01-04-2008, 04:10 PM   #190
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
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
Wink I'm No Expert, But I Want To Share What I've Learned...

Mary Jo, Susan, Pinkie -- I too have a love/hate relationship w/this thread. It is brilliant and full of great information, but the words tend to blur as my eyes cross and I think, Why do I suddenly feel so stupid?

I have had the good fortune of being led to a wonderful oncologist who specializes in nutrition. His knowledge of supplements and the like is akin to the white bearded Andrew Weill, who we've all seen on television over the years. Weill is Harvard educated and I have found that his advice is much the same as my nut/onc. I google every suggestion Dr. Gaynor gives me and I educate myself. It is a job, but I will not simply take a pill b/c a doc, as much as I respect him and as brilliant as he is, tells me to do so.

Before bc I never took pills. I prided myself on that. Well, now I am at the opposite extreme, and I believe my supplement regimen has contributed to my survival as much as the surgeon's expertise and the chemo that eradicated the ca and the monoclonal antibody that is keeping me alive, w/mets at bay.

RB's understanding of the need for a balance of Omega 3s and 6s is astute and way above my head. But, in simple terms, rather than being balanced, the American diet is about 20 to 1 -- that's WAY TOO MUCH *OMEGA 6*. We need Omega 6 but not in such drastic amnts that we typically consume. So it is wise to familiarize yourself w/those foods and ingredients that are rich in Omega 3s, which are essential to good health and have a multitude of benefits, especially in fighting bc!!

To that end I posted #176 within this thread. Have you found it buried in this book of a thread? I think it might be helpful.

I also have a thread called GAINING CONTROL, w/reference to a sister thread. It is full of what I have learned since 1998 (when I met throughout my liver) from my nut/onc guru/healer. He has a unique frame of reference as a hematologist and an oncologist who specializes in nutritional supplements. I have been taking his suggested herbal supplements since '98, through chemo (Taxotere) to today (now in my 10th yr of taking Herceptin).

I began slowly. Taking a list of 10 and starting w/1. Waiting a few days to be sure I had no adverse reactions, then adding another. And so on. I goggled every one and took notes, so I knew exactly what I was ingesting and why. My GAINING CONTROL thread (which you can type into the SEARCH within the yellow bar at the top of page -- to get to) lists alphabetically every supplement I now have evolved to take, the dosage recommended by nut/onc and a brief explanation of why I take it). I will see this oncologist in April and my list will be updated. Some remain as staples (such an Co-Enzyme Q10 -- 150 X 2 a day) and others are replaced. OMEGA 3 and 6 are another standard I adhere to. I have increased the amnt I take, based on all the news I keep hearing on television about the benefits (in reports and on shows like the Today Show, interviewing experts in this field). We are now hearing much about our increased need for D3, in the 1000s. Even if we get exposed to sun daily, as we age our need increases, and the use of sunscreen blocks the benefits as they protect us. We must delve into this important area, to help us heal, keep our immune systems at peak levels to fight any invasion, protect our hearts, neutralize free radicals and reduce recurrence of cancer. NO SMALL MATTER, to be sure!

ALPHA LIPOIC ACID, GRAPESEED EXTRACT, GREEN TEA EXTRACT (or the real thing 3X a day), CARNITHANE, GLUTAMINE, LYSINE, NAC (N-Aceetyl Cysteine) and ZINC are all being touted by the experts lately I have noted, in addition to my own onc nut. My other oncs have not had a problem w/my taking these supplements
(since '98, including during, and especially because of, Taxotere chemo for 9 mnths and while taking Herceptin to date). One of my oncs asked, You're still taking all this s**t?! I give a copy of my list of every pill I take, including my prescribed meds to all my docs.

MAGNESIUM is important (200 mg for those w/problems w/diarrhea, 400 for those w/normal bowels, more if you have constipation issues). Studies are recently showing that certain chemo patients aren't properly absorbing this important nutrient. So that must be evaluated and addressed.

SELENIUM is essential to include.

Traditional docs haven't had a half day's worth of education on nutrition in their entire medical training and education. So they commonly resist what they do not know. Many think supplements and vitamins are a waste of money and effort. Personally, with IBS issues, I cannot eat many fruits, dairy products and such, so supplements are especially important to add to my diet safely, w/o repurcussions.

I hope this information is intelligible and helpful to you. I wish us all GOOD HEALTH! Many disciplines must go in to achieving that. RB does his best to keep us well informed. Hopefully others can chime in, in plain English, so we all may take advantage of this seemingly overwhelming flood of facts and data.
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...
Andrea Barnett Budin is offline   Reply With Quote