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Senior Member
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
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How many of you are using Mistletoe???
Esther thanks for your post....somehow, Mistletoe is one of the few things I have not tested, but there may be some other LIVE data that supports your personal experience of seeing a significant drop in CA 27/29 tumor markers when using Mistletoe. I suspect it may have something to do with the alkaloid nature of the plant as it may be rich in quinolones which across the board, have time and time again been shown to drop these markers as well. It will be interesting to see what the bottom line connection between all of this is.
Thanks for sharing.
As to the original thread to take or not to take supplements, all I can say is that I HONESTLY, KNOW that I would not have made it so many years without them...even if in the end...it was all merely placebo effect, I perceive I received a benefit. I would highly recommend folks to read all the comments on various ones and find what works best with you. But don't do it blindly. Use your OWN bloodwork and tumor markers as biofeedback...test one thing at a time...if it seems to help you in any way...even if that way is merely a quality of life issue and not exactly "curative" ... stick with it...if you give it a fair test and it doesn't seem to do anything positive for you..don't waste your time or money...if you test something and get worse (this includes various flavors of chemo...folks) stop immediately and go in another direction...as there is only one way to spell WRONG WAY and many other ways to try something different that may or may not help, but at least you won't keep doing what does NOT work.
Clan of the Cave bear series of books, though fictional, offer superb insight into how "early healers" tested new herbs and plants on themselves and surprisely, rarely died even when ingesting sometimes poisonous substances...remember too that dose is everything as anything...can be poisonous at a certain concentration and many things thought poisonous...like mistletoe, perhaps, and the basis of homeopathic medicine, can become beneficial when ingested in small amounts. Interestingly, for decades, science has understood the benefits of how Retinal, an aldehyde, can be converted by the body to retinoic acid, the form of vitamin A known to induce proper cell differentiation and gene transcription. When small doses of retinal are ingested on a regular basis, they can encourage poorly differentiated cancer cells to "shape up" as it were and return to their normal cell differentiation. However there is much controversy at the moment about Vitamin A, especially the version of it that beta-carotene generates in the body which is known as Retinol, an alcohol, as opposed to an aldehyde, which can be very damaging to the liver when ingested in too high amounts. The alcohol or retinol form is also the form of Vitamin A that has been shown to worsen LUNG CANCER instead of helping it. It may make cancer worse via the same bio-chemical pathways in the same way several articles recently posted on the board about ethanol worsening breast cancer do. It is idiosyncracies like these, that make choosing your supplemental regimen SO very difficult.
Also, there is always the famous caveat of "it all depends"...what is good for the gander may not in the end be good for the goose, as those of us with varying melodies on the general her-2 theme are becoming more and more poignantly aware of each day. For those of us ER- PR- and her-2 pos...some supplements may be beneficial to us while the exact same supplements taken by someone who is hormonal positive, could actually do damage. Right now, I think Al from Canada and some of the other folks on the board are trying to generate some sort of general consensus based on cancer type and supplements based on what we know at the moment. What ever means they use to sort of put this out there will necessarily require a very flexible format as today's latest knowledge..is often overturned or "improved upon" practically the day after.
In a way, as silly as it sounds..., there simply could not be a more exciting time to be involved in her-2 than now. Even in the last 6 months..., I have seen an unprecedented increase in all things herceptin or her-2 related. It is like a great explosion of knowledge that comes when folks are nearing the end of a very long tunnel. So many connections are being made and parts of the puzzle are becoming clearer each day. I really believe that this year, we will nail down the cause of all her-2 mediated disease and by as early as next year...have something that very seriously approaches a cure, rather than a mere band-aid solution, as fabulous as it has been, any one who has lived on Herceptin for any length of time, longs for a day when the infusion cord can be permenantly cut. As great as it is to keep living as long as we are tethered to the Herceptin, there is a tremendous fear always lingering not too far in the back of our minds as to what will become of us if for whatever reasons, that supply line is cut off, not to mention the lingering feeling of never being able to be truly free as no matter how far we try to flee we are as though glued to the same spot.
Anyhow, for those of you wanting to test supplements, besides going slow, testing one thing at a time, the other POSITIVE thought you want to keep in your mind is that YOUR BODY is very WISE...meaning that usually, even if you ingest too much of something, the body "knows" how to hold on to just the part you need while clearing and excreting all the excess...provided, kidney and lung and liver function are at least adequate. This also goes for ingesting a lot of different things...though I don't recommend over doing supplementation or any drugs for those with her-2 as the tumor burden is already a lot for the body to manage...but even if you ingest say 5 things that are good for you and 3 things that are not so great..the body is smart enough to know which ones to hold in and which ones to expel...trust your instincts, listen to your symptoms, get to know your tumor markers, learn to read all your blood work and use it as bio-feedback to measure how well you are doing, what is working and what is not.
After a while, you will get a "feel" for what works and it will become nearly as automatic for you as breathing...smile..
Remember...it is YOUR body and YOUR life.
Godspeed,
Gina
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