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Anyone else out there choosing 100% Alternative?

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  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013
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    Well said Momine!

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Bluepearl, here is a fairly balanced article on what kinds of red flags to look for in claims for various substances: http://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/

  • planetbananas
    planetbananas Member Posts: 109
    edited August 2013
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    Interesting link, momine.I feel like it's so difficult to get real information on alternative treatments.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Bananas, I hear you. It can be very frustrating. My rule of thumb is that if it sounds too good to be true, it probably is. 

    Some things have been investigated, like exercise or turmeric/curcumin, as someone else posted further up. Most things, however, have not, as far as I can tell, or else they proved worthless, except their proponents are still flogging them for the cash. Thing is that even with the studies to back it, I can't imagine "treating" a cancer with exercise and curry and nothing else. In other words, it probably has use (I do exercise and eat turmeric), but it is not a replacement for regular therapies.

    You also get things that DO work, but they work in a far more limited way than their proponents claim. Like Burzinsky, for example. Apparently, his approach has had some limited success in, I think, pancreatic cancer (which is notoriously difficult to treat), but this does not mean that his approach is useful more generally.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 74
    edited August 2013
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    It's so hard to get reliable statistics on conventional cancer medicine. If you read the official cancer guidelines the oncologists use, it says it's consensus-based but that consensus may change in five years. This is probably because it has changed about that often in the past.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    NattyGroves, the consensus changes because research based studies produce new, more effective treatments. 

  • chef127
    chef127 Member Posts: 226
    edited August 2013
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    The only real changes I've seen is herceptin, (GREAT) and the AI's. and stronger Chemo drugsCry

    Same old Same old.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Chef, exactly! I would love to see a real paradigm shift happen in how cancer is approached. Maybe one day. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited August 2013
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    Momine,

    If I haven't told you this before, may I say how much I love your posts. You are logical, balanced and never defensive. I have been interested in learning about alternative and complementary therapies but am turned off by a lack of evidence (and the defense of this), extremes, like anti-semitism with tx, conspiracy theories and saying self dx is ok. You are one of the reasons I keep reading here. Thank you!

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 74
    edited August 2013
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    No, treatment changes because they find out the consensus treatment didn't work out the way they thought. Consensus chemo for most ER+ phased out when they looked back at the stats. Arimidex, the great hope, is not working out in the three ongoing trials for all cause survival.  The jury is still out on Herceptin long term for all cause survival.

    People come to the alternative groups to justify their conventional therapy all the time. If you want the truth, probably best not to read here. Good luck to you. But if you're so confident you wouldn't be here.

    Friends please don't PM me. Got summer company. Kiss May you have success on the path you choose.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    I agree with this, Natty Groves: "if you want the truth, probably best not to read here." And yes, it is pointless to read here, as I DO want the truth. I will not be posting on this thread again.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Bronxgirl, back atcha.

    Natty, not quite. Cancer treatments, especially breast cancer ones, have evolved quite rapidly in the last 20 years. This means that stats and consensus also tend to be in flux a lot of the time. 

  • digger
    digger Member Posts: 74
    edited August 2013
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    Hi Natty,

    Good to see you're still here helping out on this board.

    And I agree with you.  People come to the alternative groups to justify their alternative therapy all the time. And yes, I agree as well that if you want the truth, probably best not to read here. Good luck to you. But if you're so confident, Natty, you wouldn't be here.

  • planetbananas
    planetbananas Member Posts: 109
    edited August 2013
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    I mostly lurk in these threads because I would like to learn. One thing I don't see mentioned a lot is the fact that alternative methods can be very expensive. I personally am not in a financial position to experiment with treatments so I need more than anecdotes. What I don't need, and what I wouldn't do to others is pass judgment on why anyone chooses to visit an alternative OR conventional thread. I think it is very important to be respectful in posting. I don't appreciate reading a comment like: "if you were so confident you wouldn't be here"

    For a lot of us, there is no one or the other. Some of us are bound by finances to accept conventional treatment - I do not regret doing so, but I definitely have an interest in other things that can work and be effective.  I truly do not understand why there has to be a harsh divide between the two. 

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
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    Planet, I agree....why can't we all just get along and respect each other's decisions...I am guessing it's out of fear...fear that we have made a bad decision in treatment?

    I have chosen alternative after surgery and yes it can be costly, Dr. Wong, though is a bit less...

  • Cuculi
    Cuculi Member Posts: 82
    edited August 2013
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    Global girl: it is all very fast and with no time to process so much information...

    Exbrngrl: thanks for the information... I am open to the info everyone has and will read more about it.  It is relevant.

    After reading the last posts I believe all is just statistics and faith... Standards change, because of new research as one of you posted, so nothing guarantees us that chemo x, y or z will "cure" us.  Doctors explain that the last studies say that x% no recurrence, y%, blah blah blah. (I have also read scientific journals).  

    I dont want to be one more statistic, this is why I want to have faith and believe that not only drugs (chemo) can get me well.  

    I was having a conversation with a friend today and we were talking about how people used herbs (valeriana, camomile, etc) and natural medicine to cure themselves before (eg. for a cough, for stomach ache, etc).  Today most people use medicine.

    So, if we are here is because whatever we are doing we believe it will help us. Our mind is so powerful that I am sure it will help.  We have to "exercise" our mind to believe we will be cured (if we can use that term).

    Momine, I also believe it is a spiritual thing.  A challenge I have to go through. I have to let go the way I have always being trying to control my life because life has shown me that it doesnt work that way.  However, I do think the attitude is important.  But nor chemo, nor sprituality, nor attitude, nor nutritions guarantees not having cancer or any disease.

    We just want to keep going and I think doing what we feel comfortable with or what we believe in is the best for all of us. Smile

    Thanks again for your posts! 

  • chef127
    chef127 Member Posts: 226
    edited August 2013
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    I come here to learn about alt tx and connect with like thinkers. It s nice to know your not alone and others can share thier experiences. I search for the 'truth' but I have found  a lack of transparency on the truth.

    The truth IS chemo kills cancer cells and at the same time can kill the host, or leave you with permenant damage and a jell-o brain, neuropathy, a weak heart, a compromiised immune system, perm hair loss, digestive issues, and metatastic BC, the list goes on... and on. Then you have the AI's. The 'truth' is they stop the estro from feeding the ca. and you are robbed of the protective aspects. I don't think I need to list the potential s/e's if your taking them. It's not the aches and pains. Some learn to live with them, a small price to pay for NED. But the damage they do is unacceptable.........for me.

    I embrase the bad hand I've been dealt and I choose to play that hand with gentle tx's. Surgery was my first tx, but I'm not willing to do the destructive, although, effective? poisons.

    There is no right or wrong tx, as long as you have a tx plan and don't look back.

    We all want what you want. A long and HEALTHY life and a QOL............peace

  • planetbananas
    planetbananas Member Posts: 109
    edited August 2013
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    Thank you, Joellelee I think your guess is right. And thank you for posting about your experience with Dr. Wong, I find it very interesting.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013
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    If only we could take something that would be a 100 percent cure. But there is no such thing. So we look at statistics and weigh the pros and cons and make the best choice we can for our situation.

    I know people who did everything: surgery, chemo, rads, AIs and they still died.  Others did nothing and are still alive. Chemo killed two of my friends. I have two others who did fine on chemo and as yet have had no recurrence.

    It is gamble no matter how you look at it.

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited August 2013
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    Momine - Thank you so much for that link to Science-Based Medicine site. I am learning a lot! Smile I liked the article about melatonin. I'm working my way up to 20 mg/night, though. Wink

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Cuculi, I don't think anyone, including doctors, is under the misapprehension that chemo is a "cure." At the moment there is no cure for cancer. Conventional treatment has a track record, so it is at least possible to estimate what kind of survival advantage XYZ treatment may give, statistically. Of course, individuals are not statistics. An individual does not suvive 55 or 74 or 97%. For any given individual it is all or nothing.

    As for toxicity of conventional treatment it is, indeed, significant. However, when the chemo kills, it is usually because the patient had metastatic disease already. I, for one, have no lingering after effects of the chemo, except for a busted vein in my arm. My mom has occasional, mild neuropathy in her feet, from taxotere treatment, and my aunt, who is stage IV and in her 70s, just sails through chemo after chemo. She managed to achieve NED after her last round.

    But yes, it is a gamble one way or the other and cancer is a sneaky, unpredictable beast. My great-grandma had a mastectomy back in the 30s. Back then there was no follow-up treatment. She died peacefully from old age many years later. All I hope is to stack the odds to my advantage as best as I am able. 

    Globalgirly, you are welcome.

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
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    Someone mentioned melatonin....I take the kind that melts in your mouth but can only take upwards of 12mg...I can take more dosage of the time released ones....I wonder if the under-the-tongue ones at 12mg equal a time release at 20mg?  So confusing.

    Momine...I agree with most of what you said above, except I think chemo can destroy the immune system...so that when and if cancer does come back, immune system is unable to fight it off...I don't believe it's because someone was metastatic...also, chemo has been known to not be able to kill all cancer stem cells and may even encourage growth!

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited August 2013
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    I have, always, been interested in herbology; both as a practising witch and as an academic.  The role of women as herbalists in ancient societies is fascinating one for me.  However, having worked in the international pharmaceutical industry for years, I am, also, interested in the overlap between conventional medicine and natural medicine.

    And there is a huge overlap.  Although there are many synthetic compounds out there, much of conventional breast cancer treatment is, still, botantically based.  Take chemotherapy, for instance.  Taxol is derived from the bark of the Pacific Yew tree; Adriamycin is, actually, an antiobiotic derived from an antinobacteria from soil in the Apulia area of Italy; cytoxan is derived from mustard sulphur, an organic compound; Metformin (currently in clinical trials as a breast cancer recurrence prevention) is derived from the French lilac bush.  This fascinates me.

    Natural therapies, like conventional therapies, can cause a great deal of damage if improperly used/abused.  And, like conventional therapies, there are unscrupulous people whose major interest is to make money from them.  "Big Natural" makes nearly as much money as "Big Pharma" in the health industry.  It is unfortunate, but true.  There is more money to be made in natural supplements these days than ever before.  And, also unfortunately, there is no regulatory body for natural therapies.  It's "buyer beware". 

    Take echinacea, for instance.  Echinacea is, only, effective as a treatment for colds and flu if it is made from the root of a plant that is nearly three years old.  The plant root needs to mature before it produces enough phenol.  But, if you read the label on a great many echinacea supplements and teas, it lists the major ingredients as being the leaves and flowers of the plant.  While these do produce a nice tasting tea, they have very little benefit as a natural cold/flu remedy.  And, yet, how many companies out there market their echinacea product as a treatment for colds/flu?  Just about every one.

    That's why so many of us ask to see reliable sources cited whenever a natural treatment is being touted as effective or being recommended to someone.  We'd demand the same thing of conventional treatment.  In fact, most of us who have chosen conventional treatment have a deep interest, as well, in natural therapies.  That's why we monitor this thread.  But we do need to know - like we need to know when it comes to conventional treatment - what the sources are, what studies have been done, what the outcomes are, what the dangers/benefits are.  We're not picking fights; we just want to see substantiation, so that we can review the material ourselves.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Selena, yep.

  • planetbananas
    planetbananas Member Posts: 109
    edited August 2013
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    So well said, Selena. Thank you for that wonderfully articulate post.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013
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    Great post Selena!

    Everyone,  I am perhaps in the minority because I don't take anything.  Just try to exercise; jog, lift weights, , eat healthy stuff ( am an "almost" vegan) and only take calcium with D.

      But unfortunately I do need to take a BP pill and 3 pills for my atrial fibrillation.

    I think that is why I don't want to add more stuff ----

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
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    Dogs, I tend to think that exercise may well be one of the most important things you can do for yourself, both in relation to the cancer and just generally.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited August 2013
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    Well said, Selena. I couldn't agree more. I fully understand that neither conventional nor complimentary tx is perfect and efficacy questions and side effects exist all around, but substantiation and a documented record of use are important to me. Testimonial and anecdotal evidence are not enough.

    Caryn

  • planetbananas
    planetbananas Member Posts: 109
    edited August 2013
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    You're not alone, dogsandjogs. I eat all organic, walk on the treadmill and take 10,000 vit D, calcium and 4000 C at the moment.....

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited August 2013
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    SelenaWolf - I see where you're coming from, and I definitely agree that if used improperly, natural remedies can cause damage. Natural doesn't necessarily mean safe. Eggs are all natural, and I'm allergic to them. Laughing

    That said, there are a few posters that have come in to pick fights. I have no idea why. I don't go to the chemo threads and make people feel bad for choosing the conventional route. This is what pisses me off.  I try to let it go, though, because anger and stress are issues I'm working on to keep me healthy. Your intentions for coming here are good, but others aren't.

    Live and let live.