Edges-CAM

Gina,

Thank you so much for your site and Constantine's research.  Congratulations on being a long term survivor and your new book, Intimacy After Breast Cancer.  You are so right about doctor's never telling us how bc affects intimacy issues and the changes chemo places on our bodies.

http://www.nosurrenderbreastcancerhelp.org/Book/Intimacy After Breast Cancer.html 

I think the problems that I have negotiating my way around the NoSurrender site are probably mine and not the site's. There is just such a huge amount of information that is indeed well organized that I feel like I'm wading into the weeds there. However, when I try and research something for some reason I can't get the search engine to sort or help me out. There's a similar problem here as oftentimes people like me put a non definitive title in the subject line (like "Help!")and then there ends up some technical information on a specific treatment. If the subject lines always used a word or reference to the specifics it would make researching easier. Just sayin

Thank you all so much!
I will definitely try to fix the Search feature! Your input is terrific!
And thanks for mentioning the new book- I wrote it for all of us, I hope you like it
hugs to you all,
no surrender
diagnosed tnbc 2001

Hmmm... guess I'll look into the Curcumin after I have time to read/absorb all the info there. Already doing the rest... I think.

This week I added to my supplement list:

1.  Doctor's Best Curcumin C3 Complex with Bioperine (from Vitacost), 500 mg.  I started out with 1 tablet after a meal but increasing it to 2.  I plan to take at least 3 tablets based upon the Edge's recommendation of 1,500 - 2,000 mg.

2.  Green Tea Extract, 500 mg, from NSI (Vitacost). 

3.  Resveratrol Grape Seed & Red Win Extracts, from NSI (Vitacost).

4.  Selenium, 200 mcg.

5.  Baby aspirin, coated.

I also take

1.  D3 - 7,000 iu, along with Calcium, Magnesium, Zinc tablet.

2.  Juice Plus - fruit and vegetable powders.

Based upon the Edges recommendation, I'm still considering Parthenolide, DHA & Melatonin.  Are any of you taking these?  Anything else?

I've tried Melatonin but can't get past the vivid dreams.  I only took 3 mg of Melatonin.  I've read that a time released formula is better so I may order a time released version in a higher dose to see if it works.

Donna

Bliss,

Oh what I'd give for a cup of coffee.  I was a big coffee drinker, but after my first chemo I lost all desire for it.  It was too harsh on my stomach.  Instead all I can drink in the morning is green tea.  I've maybe had 4 cups of coffee since last summer.  I envy everyone that can have their coffee!

Donna

Donna,
Oh my, green tea is so much better for you....go with that over coffee if you enjoy it and don't look back!  I have heard that chemo can change the taste buds and it sounds like it is working in your favor...

Mainy,
I love chai....but I never had a recipe so thank you for this one....it sounds yummy and I am going to try it.  You can buy blueberry tea--I think I've seen it at Trader Joes or at natural food markets. 

xo
Bliss

Mainy,

The recipe sounds wonderful, I'll have to try it!

Thanks,

Donna

Dear Sandra,

This is not a easy question to answer because I have seen many doctors and I have an unusual combo of factors that affect how my answer would be interpreted, so please bear with me.

Over the first year after dx I met with several integrative docs....an MD at UCLA, a naturopath, and a ob/gyn who practices anti aging medicine, but has a genomic breast cancer protocol.  I also called a consultant at Life Extension Foundation, and wrote to Constantine who composed the Edge CAM at Nosurrenderbreastcancer.org. 

I cobbled all the data together and mixed in some of my own research from peer review journals available on the internet, along with some advisements from my brother (in law) who is an oncologist.

So you see, I saw a lot of different people, but I had to.  Even though I was stage 1 with no lymph node involvement, being triple negative meant chemo was imperative.  But I had secondary health issues that were incompatible with the chemo that was recommended, which was TC x4.  Plus I had some peculiar tumor features, which were dismissed as meaningless by all the oncs I saw, but when I did my own research I learned this conclusion was mistaken. 

So I saw many oncs, even flew to MD Anderson, and they all had varying concerns about my taking chemo with TC; and using Adriamycin was out because I had multiple heart related issues.  But most of them felt it was medically manageable, even if I needed hospitalization.  Then the top onc in the bunch told me that she had a patient like me in the hospital and she was not responding to medical management, so I felt the decision was made:  no chemo.

Then I had other delays because of my liver or a lymph node and it was 7 months post lumpectomies and it was too late to start rads, so, no chemo, no rads.

I had to pursue a proactive protocol and so that is why I went with so many consultations and personal research.  This approach is probably specific to me.  If I had the slightest lymph node involvement, I would not have questioned the need for chemo at all.  I would have followed exactly the recommendations given, but I would have probably taken vitamin D, curcumin and perhaps a few other sups, spaced safely away from infusion dates.  Also, since chemo works for 48 hours or so, I would have taken MagOx to flush it out of my system after each infusion period if that was okay with the oncologist. 

All of this would be a personal experiment and not really translatable to others because we just don't know....it is dangerous to step away on your own, or at least, very scary.  For now we believe that triple negative cancer needs genotoxic therapy and I have to live with the reality that I didn't do it, and if I am wrong, well, that is a big one.

So, I am hesitant to post the names of the integrative doctors I saw, but will be happy to give the names privately to anyone who wishes to know.  Plus, there are many excellent doctors besides the ones I saw, and I could give you those names as well, or I could give you the name index that I used to shop around.

Just let me know.

All my best,
Bliss


Edited by MsBliss - May 16 2010 at 4:30pm

Dear Donna,
For immune stimulation, I have read that elderberry works and it is backed up by research.  There is also a tincture made of several mushroom species (rec UCLA), I think it is called Mycoplex, or something like that.  There is also:  AveUltra (Avemar) and it's sister product Immpower (rec UCLA too).  But originally I used corioulus mushrooms, which is the analog to PSK, which was used in the Japanese study on breast cancer.  In Japan, all bc patients generally use some sort of mushroom immune boost, and PSK is the most popular.  You also want to make sure you boost the right segment of your immune system--boosting certain cells is not necessarily where we should go--we need to modulate the immune system, not super charge it across the board.


Edited by MsBliss - May 16 2010 at 5:56pm