Let's review the supplements

[al from canada]

To all the crusaders out there:

It is very tough coming up with a supplement regime that will be truly complimentary however, here is a list of suppliments that we have found useful:

Rhodiola is one herb that I feel needs further investigation. Linda and I both take it 2Xday. It has proven adaptogen properties as well as (chemo-support and anti-cancer actions). It doesn't have all the negative side efects that Ginseng does, such as high blood pressure, nervousness etc. That being said, the siberian species of the herb is the most potent. We buy ours at www.iherb.com


Rhodiola Rosea: anti-tumor, energy, physical support. For a great article on Rhoiola: http://rhodiolarosea.org/HerbGrams-2002.pdf

IP6: Including indosol, has a proven anti-cancer track record, particularily for liver mets

CO-Q10: excellent for the heart, good synergy with herceptin for cardio functions. Studies have shown anti-tumor properties above 345 mg.

Vitamin D: help uptake of calcium for bones (due to damage caused by chemo)

Gluta Kola: has anti-tumor properties

Melatonin: help sleep, reset biolical clock, anti-tumor actions

Curcumin: synergistic with herceptin, anti-tumor properties, careful using this during chemo as it is a stong anti-oxident

Flaxseed oil: this one contains 145 mg. oleoic acid, very potent anti-tumor and pro-herceptin through HER2 pathway

Celebrex: 100 mg 2X day, COX inhibitor

Please note that current thought suggests limiting any anti-oxident supplimentation DURING chemo. These would include Curcumin, CO-Q10, Flaxseed oils etc. There are also phyto-estrogenic compounds such as reservatol, flaxseed oils, borage, etc you must balance if you are est ++
One of the best Est+ fighters is 13C and DIM (the metabolite). Studies have shown that co-administration of tamoxifen and 13C is VERY synergistic! Caution about 13C, if you live in a region high in dioxins, best not to take it as it helps receptor binding of dioxin.

[*_madubois63_*]

Thanks for the information. Just wanted to add to your list:

I take Noni. It comes in juice form and can be bought at the health food store. It tastes really good. I beleive it is an anti-oxident, so check with your doctor if your on chemo. I took it the first time I was diagnosed in conjunction with my chemo. My mass shrank at an unbelievable rate, and the doctors were pretty impressed. It could have been the chemo, it could have been the noni and it could have been the two working together - who knows. As soon as I relapsed, my Mom ran out and bought me a bottle of the noni. I take a one ounce shot every morning, and as you may know I've had a great response to treatments. It takes skill (of the doctors/with the proper meds) and the talent (of the patient/good attitude) to beat this thing, but I will think of the noni as my lucky socks. Here's a link, if your interested - http://www.cnw.com/~timo/scien/cancer.html

I also take Mataki mushroom (supplement form), but you can get it in its natural state - hard to find though. The Japanese use it as a chemo. As with anything, talk to your oncologist before you take anything. - http://www.healthcastle.com/herb_mushroom_maitake.shtml

[Lolly]

Al, how much melatonin does Linda take? I/we have been taking 2 mg nightly for years, but I'm wondering about increasing the dose because of the anti-tumor properties...

Love, Lolly

[al from canada]

Lolly,
The maximum dose recommended for melatonin is 3 mg. I wouldn't go any higher than that. I would go much lower if you can get the sub-lingual tabs.
take care, Al

[*_jeff_*]

Thanks to all for this valuable input...I'm constantly trying to help Rachel figure out what to take/what doses etc. so it's great to be able to share the info.

In addition to some of the stuff that's been mentioned (and I've been particularly impressed by the literature on IP6/inositol) there's also beta glucan, which has been shown to downregulate her2 and cordyceps, which is another kind of mushroom extract.

Lots of calcium and magnesium is important for women who have gone into menopause...

Grape seed extract.

garlic is a cox-2 inhibitor, as is turmeric

green tea extract (you can even get it decaf from Life Extensions)

oleic acid (per all the recent news on olive oil, I ordered Rachel this as an extract from Black Currant)

alpha lipoic acid

CLA

quercetin

astragalus

calcium d-glucarate

That's what comes to mind just now...

Best,
Jeff

[AlaskaAngel]

Because "taking a pill" somehow has acquired so much power in our culture, I just want to emphasize the importance of supplementing with enough natural sunshine and exercise daily to help the bones work, so that you aren't wasting the calcium and magnesium and vitamin C you are packing in...

And if you live in a northern climate like me, always remember to add a little cod liver oil on dark days for vitamin D...

[StephN]

Thanks for reminding me to step outside for a few minutes - as we are having a lovely sunny day here in the misty woods!

I understand that we take in the vitamin D from the sun though our eyes, so do not need skin exposure to "get sun."

[al from canada]

Lolly,
We cut back Linda's melatonin to 1.5 mg / day. I think it was giving her a "hang-over" effect. Melatonin is really strong suff and shouldn't be underestimated.
Steph and AA,
Sure would like to step into the sunshine for some V-D but the weather just sucks up here. Maybe this weekend.
Al

[AlaskaAngel]

Steph, your reply got my attention. I know somewhere back in time (before chemo, certainly) I must have read about that effect on the eyes because when I am out in the sunshine I have to remind myself to keep my eyes open even if it is really bright outside, because the light enters the eye and vaguely I understand that it is transmitted somehow to the pineal gland and affects that in the production of the final vitamin D.

So do get outside and keep the eyes open, folks.

At a different bc site where a woman asked about using a tanning bed and the controversy about that, I raised the issue of vitamin D as well as the issue of increasing UV toxicity from changes in the atmosphere.

A new booklet that just arrived from CancerCare says this:

Eat plenty of vitamin D-fortified milk and cereal; fatty fish such as salmon, tuna, sardines, herring, mackerel, and swordfish/

Get some sun, but not too much: If you live north of the line connecting San Francisco to Philadelphia, you probably don't get enough vitamin D. A 15-minute walk in the sun at least 3 times a week with the skin exposed helps the body to make vitamin D naturally. Although sunscreens prevent vitamin D from forming, doctors still recommend you use a sunblock for prolonged sun exposure. Sunscreens reduce the risk of skin cancer and skin damage.

[AlaskaAngel]

Al/Linda I commiserate with you... I ain't in the Bahamas either. I have also read somewhere that it is possible to store up vitamin D to some extent, and I think for us northerners it pays to make a focused effort to get out there on days that are at all bright and not let them slide by because we are busy. Maybe it isn't good to get extended exposure in a single day, but better if we get some as regularly as we possibly can?

A.A.

[Lolly]

The food highest in vitamin D is....eel! A whopping 4,700 iu's per 3 and 1/2 oz. I don't think it's worth it, AA's suggestion to take cod liver oil sounds muuuuch better :D

Love, Lolly

[*_Susan M_*]

Here's a Sloan link I follow for latest on supplements and herbs research.
If something listed shows promise on mice, early lab studies, I keep researching.
Ask my doc.
http://www.mskcc.org/mskcc/html/11570.cfm

I am currently rediagnosed with lung mets Nov 2004.
Original diagnosis Her2 +++ as of March 2002.
For a time between chemo I was taking Maitake Gold mushroom from DaVinci Labs and I think I had far fewer colds and a low tumor marker of 16 in early 2004, it's now around 48.

I had shrinkage of mediastinal nodes, although mets in lungs followed.
The nodes may have been unrelated infection. I did take I.V antibiotics.

A friend/patient of Sloan was told they are researching the mushroom extracts.

To order Maitake Gold or D fraction. https://www.davincicon.com/

I am now on Herceptin and Navelbine treatment, six more weeks
to a scan. My WBC and hemoglobin have been excellent. I actually
had a rise of WBC this week from 4000 to 5000 range. Stable hemo of 13
I needed Procrit and Neupogen with chemos Adriamycin and Taxotere,
of course these are more toxic than Navelbine. My doses
were lowered due to neutropenia of 300 on the first round.
All lung mets disappeared in July CT of 2002. Then more Taxotere/radiation
I last had treatment of only Herceptin from Feb-July of 2003. Lung
mets reappeared approximately a year later. So I'm not sure
if the Herceptin helped.

At the time between chemo, I also took about 300 capsules of
Cell Forte from Enzymatic Therapy which is Inositol and IP6.
I took 2-4 per day, but it should be higher with active disease.
Oncologist gave the OK to take this with current Navelbine/Herceptin.

I have been taking a multi without iron from Douglas Labs, pycnogenol from Twin Lab and one digestive enzyme with supplements, along
with one Maitake D fraction and will add in Cell Forte( Inositol and IP6) from Enzymatic Therapy this week. You can purchase this at most health food stores. I'll try to keep you posted on my results.
I'm going by my recall and order receipts. I was not keeping good notes.
I have started noting my supps and meds daily.

Recently I went for a second opinion before lung biopsy with a top breast cancer onco at a leading center.
I was told that with my tumor size and aggressiveness, poor health history, she expected more mets at time of dx and now. Thought I probably had lung infection. Several other docs suspected mets, as did I.

I also do not drink soda, or sweetened bottled beverages for the past 25 years (ended migraines). I do drink tons of black tea, and almost never milk, switched to rice milk years ago for cereal and spring water.
I rarely eat sweets. Sugar definitely feeds bacteria, said to feed cancers,
and suppress the immune system.
I also recommend juicing, and plan to add carrot juice, apple, beet, celery, ginger blend. It helps greatly with fatigue.
I've begun to take 2 tbsps of extra virgin olive oil about two weeks now.
hopefully it enhances Herceptin and slows HER2 as shown in a study
which is posted on this board last month.

I hope this helps someone's research.

Susan M

[Unregistered]

you are wrong about melatonin dosage. All the positive trials on Melatonins cancer fighting effects have been with doses from 10 mg to 75 mg per day. 20 mg should be the bare minimum. Do some searches on pubmed, sci.life extension (goggle group), lef.org for more info.


heres some examples:

melatonin (long article)
http://search.lef.org/cgi-src-bin/MsmGo.exe?grab_id=0&page_id=3827&query=melatonin%20cancer&hiword=CANCEL%20CANCERA%20CANCERAN%20CANCERAS%20CA NCERI%20CANCERIN%20CANCERIS%20CANCERNET%20CANCERS% 20MELATON%20MELATONINA%20MELATONINON%20MELATONINS% 20cancer%20melatonin%20

http://www.lef.org/newsletter/2005/2005_09_10.htm?source=eNewsLetter2005Wk36-2&key=archive
quote: "The researchers found a consistent benefit across all melatonin dosages on one year survival when the hormone was tried as an adjunct therapy in a variety of advanced stage cancers. Compared to those who did not receive the hormone, those who received melatonin had a 44 percent lower risk of death one year following their trial enrollment

good melatonin discussion:
quote:"The cancer work is on a wide variety of very
common cancers,
and makes melatonin the single most effective therapy
for cancer
prevention and treatment"
http://groups.google.co.uk/group/sci.life-extension/browse_frm/thread/d54f57352ef227d8/0499cb3673714b7c?q=melatonin+cancer&rnum=16#0499cb3673714b7c

This american clinic uses melatonin
therapy:http://cancernet.com/
It is discussed
here:http://cancerforums.net/about2458.html


glty

[RobinP]

I guess everybody has their own supplement list. My is a bit different than Al's.

vitD- supposedly helps with apotosis of bc cells

VitA- may help to bind the estrogen receptor

olive oil - supposedly helps to bind the extracelluar domain of the her2 cell.

primose oil- supposedly helps to block intracellular portion of the her2 cell.

tumeric- supposedly helps decrease mets.

[Alice]

I have a question about the flax oil.It seems I read in one of the cancer fighting diet books ( don't remember which one) that flax oil itself is not helpfull that you need to take the flax seed itself which you can grind and use in cooking or just by itself. Has anyone else heard this? If so how much truth is there in it?
Also I'm so confused about which oils are good oils and which are bad.You all seem to know much more about this than I do. Can you clarify it for me? I just found a Margarine made from canola oil with no tran fats when I read that canola oil is bad. I just can't bring myself to eat dry toast!

Thanks, Alice

[Maryanne]

Hi Alice,

The site below will help you with your question on Flax oil and Flax seed.

http://www.grouppekurosawa.com/nutrition.htm

[CherylS]

I am very interested in this topic, as I have a cyst on my pineal gland and have often wondered if that has contributed to my bc. My question now though, is regular melatonin purchased over the counter as a supplement the same as what they are mentioning in these articles, or is there another way we should be getting it?

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9516238&query_hl=6&itool=pubmed_docsum

[CherylS]

sorry, here is the other link I tried to put in above.



http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12791421&query_hl=6&itool=pubmed_docsum

[Unregistered]

regular oral melatonin supplements purchased over the counter are bioavailable, though, as mentioned, absorption can vary up to 3500% between individuals (which make me think that the above studies would have shown even more impresive results, had patient plasma levels been measured and dose adjusted).
Sublingual melatonin is considered to be better absorbed. (i dont have a study on this, though).
Also consider time-released melatonin as melatonin has a half-life of only 45-60 minutes.

glty

[pattyz]

Lolly,
Just some fyi:

I've been taking 9mg (3-3mg pills) of Melatonin for over two yrs. There was atleast one study done using 20mg of Melatonin in conjunction with rads for brain mets. It had a positive outcome... I say that cuz I don't remember (as usual) all the details!!

My onc has told me on a number of occasions: "Keep doing whatever you're doing..." when I've asked because of my overall, well, 'longevity' I guess, with brain mets and NED body.

I started with 3mg and in steps increased to 9mg.

hugs,
patty

[Unregistered]

Alice re dry toast.

CLA which is found in animale fats from grass fed ruminants which includes butter is indicated in several trials as a benificial factor for BC, at about 1%of diet.

You can look it up on Life extension, or for trials on NCBI enter say"breast cancer CLA" in the search engine or look on google.

There is also suggestion in trials that a limited amount of diary fats can be benificial in weight loss / calcium intake implications etc.

In the absence of definitave answers these things must be for each individual to reasearch and make their own decisions, but there is certainly enough suggestion of benifit to justify consideration.

RB

[Unregistered]

Re glty's link re melatonin


Again another potentially benificial agent that appears to act in the area of lipids and insulin.

RB

http://groups.google.co.uk/group/sci.life-extension/browse_frm/thread/d54f57352ef227d8/0499cb3673714b7c?q=melatonin+cancer&rnum=16#0499cb3673714b7c
ABSTRACT

Melatonin also reduces serum lipid levels in mammalian
species, and helps to prevent oxidative stress in diabetic subjects.
Long-term melatonin administration to diabetic rats reduced their
hyperlipidemia and hyperinsulinemia, and restored their altered ratios
of polyunsaturated fatty acid in serum and tissues. It was recently
reported that melatonin enhanced insulin-receptor kinase and IRS-1
phosphorylation, suggesting the potential existence of signaling
pathway cross-talk between melatonin and insulin. Because TNF-alpha has
been shown to impair insulin action by suppressing insulin
receptor-tyrosine kinase activity and its IRS-1 tyrosine
phosphorylation in peripheral tissues such as skeletal muscle cells, it
was speculated that melatonin might counteract TNF-alpha-associated
insulin resistance in type 2 diabetes. This review will focus on the
physiological and metabolic effects of melatonin and highlight its
potential use for the treatment of cholesterol/lipid and carbohydrate
disorders.

[Karen t]

Re this statement: Please note that current thought suggests limiting any anti-oxident supplimentation DURING chemo. These would include Curcumin, CO-Q10, Flaxseed oils etc.

I am on Herceptin and Navelbine combo, as my onc said, "for as long as it continues to work." Under these circumstances, what should I be doing about supplements?

Your input is very much needed since I don't feel that it's forthcoming in the regular medical setting.

[cmn]

Hi - I take a 21 mg dose of time release melatonin under the close supervision of a UCLA MD. He recommends Douglas labs. I used to take 3mg on my own up until my doctor's recommendation. I have found that there is an initial adjustment period, the strange dreams pass after a couple of weeks. Now I enjoy more vivid dreams. Regards, Carol

[Unregistered]

Karen T please see the post / link on curcumin which you might like to show to your onc.

From memory the trial suggest curcumin shows a strong synergy to taxol.

I have also seen suggestion that omega three may have synergisitic action.

I have also seen suggestions other supplements work in synergy.

Try searching on "NCBI" entering the terms of interest into the search engine - eg chemo type and supplement.

http://www.ncbi.nlm.nih.gov/

I think you have to look at things one by one for your particular circumstances, and discuss them with your onc. There is so much information out there it is difficult for anybody to keep up with all aspects.

RB