Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Anyone else out there choosing 100% Alternative?

Options
1568101134

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,949
    edited August 2013
    Options

    Agreed, global girly.There are those who definitely want to pick fights. I want to try to learn, but I have received defensive replies when I question anything about alternative therapies. I hope that subsides as well. I have no desire to say that x is better than y, or to defend any particular path. I'd just like to learn something and ask questions in a rational and intelligent manner. I will admit that testimonials and anecdotes are not good enough evidence for me so maybe I don't belong here but I hope not to contribute to divisions or acrimony.

    Caryn

  • Cuculi
    Cuculi Member Posts: 82
    edited August 2013
    Options

    Thank you Selena for your post.  It is enlightining for me Smile

    Globalgirl, I agree with you.  I follow this thread because I feel understood what I am going through and the choices I am making.  Understood does not mean that everyone has to agree with me.  In fact, I appreciate "positive criticism" because I feel I am learning and "adjusting" the path I have decided to take.

    I also feel, like dogs, not wanting to do more stuff.  But in order to "settle" my path I need to learn and try and decide.  I listen as open as I can other experiences (conventional or alternative) and try to follow what I believe and have faith.  What I believe in is what I think will do the best on me, on my mind and body.  Nothing is 100% guarantee I know, but that is what I believe and the mind is so strong that it actually makes me feel better. BEcasuse as dogs says anger and stress are issues to work in order to keep onself healthy.

    My next "try" is acupuncutre for my arm... is it alternative? maybe not for treatment of BC itself, but, since it reminds me 24/7 I have had surgery and I believe that is not helping my mind to heal myself (not helping with my relationship with my husband either)...that is my next "stop"!Surprised

    By the end I will be broken but happy!!!! And hopefully with a better relationship!!! Laughing

    Now back to work!!!!

  • GlobalGirlyGirl
    GlobalGirlyGirl Member Posts: 77
    edited August 2013
    Options

    Caryn - Testimonials and anecdotal "evidence" are definitely not good enough for me either. They do have their place, though. Enough of them puts more pressure on the scientific community to research the claims.

    I was careful when I picked my regimen, and the biggie in my arsenal is curcumin. Lots of (and ongoing) studies on that. 

    I apologize if I've been defensive. Sometimes it's hard not to be wary - especially when gals have come in here to pick fights. That's not an excuse, though, for being rude. So, I'm sorry. Embarassed

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    SelenaWolf,

    Thanx for the informative post. Nature is a beuatiful thing. Save the rain forests. I know there are a lot of drugs and meds that come from the earth. But in order for 'natures' drug to be effective sometimes you need to take toxic levels. Was mustard sulfur gas used in warfare? I think so. I have a great deal of admiration and respect for those who choose conv BC tx and give up a year or more to fight it and continue to fight and some endure another 5 or more years to stay ca free. I was offered massive doses of the poisons in a non chalant way like I was getting an aspirin for a head ache. "That is how we treat BC" take it or leave it. If the onco offered me IPT chemo I may have submitted to it. A combo of several chemo drugs in small doses adminstered with Insulin. Little s/e's and NON toxic. Its not a very profitable chemo......so its not offered. Better than nothing. I found out about it after the fact.

    Now I'm off to have some Jack Daniels, Not the whole bottle............It could kill me.lol

    Peace and Love...Maureen

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    Yes kayb, she got me running, right into the research. I guess I can say she did me a favor. She didn't even take the time to concider my poor health. I have MS the "But you look so good" disease unless your in a wheelchair and diabetes. Her evaluation stated In good health.

    I have an MO now that I love and she does not agree with my choice of coarse, but understands and respects it. As far as cancer goes I feel great, I"m NED............but the fear is there for mets, like most of us.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
    Options

    Chef, that doctor sounds like an idiot. I do wish that docs would make more of an effort to be flexible and really listen to patients. A couple of mine did, others not so much.

    My surgeon was probably the best of my docs, on that score anyway. He took my wants into account, and he always gave me options, each one of which he could cite the pros and cons for from research.

  • Lily55
    Lily55 Member Posts: 1,748
    edited August 2013
    Options

    I passionately believe it is different for all of us and one of my big problems with conventional treatments is its based on protocols based on statistics five years out of date unless you are lucky enough to be at a major cancer centre, my private Onc at Marsden is not against batural approaches and is open minded but he warns against phyto oestrogens and soy if you are on hormone blockers as there is evidence they can be hijacked by cancer cells, but if not on hormone blockers they could help. This shows me how complicated it is.......



    I also dispute there is truth in official statistics for cancer.......its all in how they are presented, and no true clinical trials have ever been done for chemo as it was considered unethical to have a control group as there is proof chemo ingredients kills cancer cells along with all healthy cells, but clinical research does show chemo encourages cancer stem cells, which conventional medicine once denied even existed..and are now the target of new treatments! ....so for me i keep an open mind.

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    Momine.

    The first surgon I saw was also a horror for me. Her first recomendation was a MX. At our next visit it was a DMX and I should visit her husband who is a gyn for a hyst, she searched the other breast for problems, found a pea sized lump and sent me for a u/s that found nothing so she did a bx in her office and it was b9. Thanx for being thorough..but she seemed disappointed. I took my DD w me to the final deciding appt and a MX and a total LND. WHY? FF-> found a surgon who successfully did a PMX.

    Intimidation and scare tactics! It got me 'running' from OVER TREATMENT. If I sound angry.......I still am. And that angers grows everytime I see an expensive tv commercial from cancer centers. CCofA even offer limo's to take you for tx. TOO much $$ at the expense of suffering ca patients. A very profitable business.

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    Momine..........I read your posts about the fasting diet.  It is easy for me, and makes a lot of good sense for weight loss and CA control.

    Thanx

  • bcfree2013
    bcfree2013 Member Posts: 19
    edited August 2013
    Options

    Selena, very informative post! Chemo worked for me well and I experienced few side effects. But I feel I was both physically and mentally weakened by chemo.

    I like natural therapies. I am Chinese and I have been reading a lot about traditional chinese herbal medicine. In China many many cancer patients use traditional chinese herbal medicine to treat their cancer either because they cannot afford the conventional treatment (surgery+chemo) or because conventional treatment failed. Some of them survived, most not.

    I personally know one women with metastic breast cancer in lungs and bones. She received at least three chemo drugs and a hormone drug, which didn't work for her. Her cancer grew fast during chemo and she became very weak (almost died). So she tried traditional chinese herbal medicine and a different hormone drug. It worked and she is still alive today. She survived MBC for more than seven years now and her quality of life has not been affected by treatment. I cannot say the herbal medicine saved her life (maybe it's the hormone drug that's working), but I think it must have helped her during the past seven years.

    Chinese herbal medicine is usually all natural, relatively cheap, and have very few if any side effects. But it may take some time (a couple of months) to find a combination of herbs that work for a person. The good thing is that if a herb combo is effective, its likely to be effective for a long time and it's very unlikely for the cancer to become natural herb resistent. While chemo effect is usually fast, cancer may become chemo resistent over time. I wish one day cancer treatment can become individualized and all natural, with very few side effects.

    Last, I want to mention that exercise is very good. I know three women who survived metastic ovarian cancer. One is 16 years out, one is 5 years out, and one is 2 years cancer free. They did chemo and surgery, took some chinese herbs, and/or walked a lot. I am almost done with conventional treatment and I will start to use some chinese herbs after I read more about them.

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
    Options

    I, myself, also had terrible experiences with traditional doctors, scare tactics and one fired me for asking questions and being my own advocate, go figure.  I do take pacific yew Tincture along with curcumin, Wong's herbs and many other supplements.  I feel great.  It has been a year since diagnosis. Hopefully, i will have many more to come.  I take EVERYTHING into consideration...stats/personal testimonies from women I friend on forums, doctors and people on yahoo groups for breast cancer/studies etc and then I cross reference everything and make the BEST decision for ME that resonates peace for myself.  I am so tired of defending my decisions.  We all have the right to decide what is best for us...no doctor, or relative should have a definite say in these matters because if I don't believe in the effectiveness of my own protocol, whether it be traditional and/or holistic then it will not work.  xxoo

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013
    Options

    Well said. My family has been very supportive with my decisions. My DIL disagreed with my not doing rads, but nobody else did. My son got on the internet and looked up AIs and agreed with my decision to stop them after I experienced such horrible SEs.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
    Options

    Chef, I also had a bad experience with the first doc I saw. Although he was more in the under- than over-treatment end of the spectrum. Mainly he was just not up to snuff. So I fired him.

    I am glad the fasting is working out for you, and I agree, it is much easier than you would think at first.

  • Mardibra
    Mardibra Member Posts: 194
    edited August 2013
    Options

    I guess I was lucky...I have a great conventional cancer treatment team.  BS, MO, RO, Plastic Surgeon, and Nutritionist.  I was never made to feel stupid for asking a ton of questions and they all took the time to answer all my questions.  I am the type who does research so I had a lot of questions.  They answered them all to my satisfaction.  Maybe because I am treated at an NCI facility? I dont know.

    If I could find an alternative treatment regime that stood up to the "me" research test, I would give it a try.  But I have yet to find that.  What I have found is a lot of anecdotal evidence, websites selling products (immediately makes me weary), and treatments that just dont make sense.  Ive also found a lot of nonsense....as an example, several on the alternative forum have insisted there is a link between root canals and breast cancer but not one of those individuals can back it up with anything that passes the "me" test.  In actuality, I have found lots of evidence that claims its a lot of woo.  But, as Caryn stated earlier, when you ask a question you are immediately met with defensiveness.  Not exactly a great response.  

    I also take issue with people spreading false information...information that goes far beyond opinion.  So, if I know its false and could therefore lead someone astray, I will call it out.  Opinion is fine but claiming something is "a cure" is simply irresponsible.  If that is considered picking a fight, then so be it.

    Does chemo damage your immune system?  Hell ya it does!  But, your immune system recovers.  There is lots of evidence to support that.  So, until there is a cure I will continue to look, research, and ask questions.  I also expect to continue to receive nasty responses...comes with the territory I guess.

    ETA:  I also do not believe in Big Pharma conspiracy theories.  As Selena stated earlier, Big Herbal/Natural makes just as much money on its products.  Also, conspiracy theories of this magnitude would just not be sustainable.  Do doctors ever get cancer?  Do their family members get cancer?  Of course they do....but yet they take the same conventional treatment that I did and recomend it for their family members as well.  Do drug company employees/scientists get cancer?  They also take the same treatment.  Are they all duped by Big Pharma?  I highly doubt it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,949
    edited August 2013
    Options

    I was also not happy with my first mo. My RO was fabulous and set me up with another mo. She is equally fabulous. Don't know if I'm lucky or just persistent (I would have never put up with the first mo). I have always been open and honest with her and she is equally open and honest with me. I feel we have a true partnership when it comes to my care. It is a shame that not everyone is in a position to have such choices and may become hurt and angry by less than great doctors. I hope that, going forward, anyone who reads this will not hesitate to seek a great doctor, if they can. There are some truly wonderful ones out there.

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    All of the supps I take are for general good health. Not one is CA specific. The DIM is simply for estrogene metabalism and balance which can benifit healthy menopausal  women. My sister gave a bottle of PAW PAW and protocel which are ca specific but I don't want to take or put my faith in them. Dr Wongs TEA is also for estro metabalism and general good health specifically for me and all my health issues. Avoiding sugar and processed foods (soy) excersise, sleeping well,  keeping a clear head (stress), and Momine's diet. Very dense nutrition, low calorie, and high nutri content. I'm trying but the cookies get in my face. I don't feel that a healthy life style and taking care of yourself qualifies as alternitive tx. We should all live that way and hope our bodies don't betray us again.

    I was one the people that had all my root canals and metal fillings removed at the tune of 9,000$ It was proberbly the fear from research. I do regret that but a lot of health issues MAY be due to metal(mercury) toxitity?

    Peace...Maureen

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013
    Options

    This is not to do with cancer, but I recently had a very sore knee and could not get in to see my favorite orthopod. So saw a new guy in the practice. He was very curt, did not seem interested, could not find anything wrong on the x-ray. Said I had a sprain. I then asked what a certain area  on the x-ray showed and he said "Oh, you have bone-on-bone, very little cartilage." (If I hadn't asked, would he even have mentioned it?) He then sent me to therapy.

    I had six sessions which did not really help much, but they tried. Then he sent me for an MRI. When I saw him to get the results, he pointed at the knee image and said I had a
    "probable" bone bruise. He said I could get a cortisone shot if it hurt too much. I said I would think about it.

    On the way out, I asked the front desk for a copy of the MRI report (which he hadn't even showed me)  To my surprise it mentioned meniscus tears, bone fragments, a fracture and a Baker's Cyst. 

    I called and left a  message with his secy wanting an explanation. Two days later he called back and said he didn't believe I had a fracture. (despite what the report showed) and that a Baker's cyst was just excess fluid. 

    So maybe all the things the report showed were minor (to him) and maybe not unusual in a 77 year old woman, but---shouldn't he at least  have gone over the report with me? If I hadn't asked for a copy I wouldn't have known these other things were wrong.

    I am very disappointed and plan to go back to the ortho I had a few years ago when I had a stress fracture on the other knee. He was very thorough in his explanation and warned about only walking, no jogging for 6 weeks.

    The new guy said nothing about limiting jogging or walking!!!!

    What a difference between the two---

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    The 2nd surgon I consulted with was wonderful but her option was neo chemo and then a possible Lx IF the chemo worked. She is Jewish and had a DMX and chemo and recon. She even let me feel her new boobs. I know she was predisposed for BC but I don't know if she was DX'ed w BC. I can't remember the name of the gene she carried.

    She would have been my choice if not for the neochemo. I did go back to her to have a LN removed. She partners in a state of the art BC facility and I used the PS in her building. So not all the drs I saw were dismisive, just the first surgon and first onco.

    Edited: She is of Ashkernazi Jewish decent, Eastern European........Braca1&2, same as AJ. I thought it was a differant gene..........She is so young.

    xox

  • fredntan
    fredntan Member Posts: 237
    edited August 2013
    Options

    I am almost completely out of all my supplements.



    where do youll get yours from?



    i mainly am getting all my stuff from dr block. but am wondering if I can get cheaper.

    I like his omega 3 since they are wild caught and fresh. his tumeric gel caps are easy to swallow & has the bcm95 in it.

    looking for cheaper DIm. or calcium d glucarate.



    which companies are trustworthy

  • milehighgirl
    milehighgirl Member Posts: 397
    edited August 2013
    Options

    BCfree, thank you for your post!  I'm sure all of us would love to hear about the chinese medicine you end up choosing.  Maybe you can advise us on what the best approach is, who to consult with, what to take, etc.

    These posts have been wonderfully informative ladies.  Keep it coming!

  • Mardibra
    Mardibra Member Posts: 194
    edited August 2013
    Options

    I think the dentistry field generally recomends that all mecury filling be replaced with porcelain (?).  Clearly mercury is not a good thing to have in or near your body.  However, a link between mercury and BC?  No evidence of that.  Might it be proven in the future?  Maybe.  But I will wait and see.  As it turns out, all of my fillings have been replaced with porcelain already....years ago actually.  Connection?  No clue.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
    Options

    Mardibra, I do agree on the fake info bit. I thought of it last night, after we had had an unusually civil and useful discussion here.

    One of the things mentioned was LDN. When you look up sites promoting this drug, they typically have a long list of conditions it is supposed to "cure." One of them is AIDS. 

    Last year an old friend died. He was not a close friend, but someone I was very fond of all the same. When he died, we were told a cancer killed him. Last night we learned from a common friend that the guy, in fact, died from AIDS. He had been on the anti-retrovirals for years with splendid results, but then someone convinced him that he could be "cured" with some kind of alternative treatment (I am not sure which one) and he went for it. 6 months later he was dead.

  • Lily55
    Lily55 Member Posts: 1,748
    edited August 2013
    Options

    For me integrative is the best combination, i do think both conventional and alternative have good things to offer, sorry about your friend Momine

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
    Options

    Lily, thanks, and I think that is where I am too. I exclude nothing and try to learn about everything. If I am convinced that something will help me, I will do it, regardless of where it belongs in alt/conventional classifications.

  • chef127
    chef127 Member Posts: 226
    edited August 2013
    Options

    Mardibra,

    I did hear and read that the ADA denies any connection to disease and mercury fillings. My mouth was full of the shit. If you have MS it is recom you have the merc fillngs removed, it MAY be one of the causes of MS?? When I read it MAY cause BC, I panicked and had them out. NO ONE knows the answer.Many of my fillings loosened and broke through the years and I wonder how much of that I swallowed. The dentist I saw regularly had chelation tx to detox the mercury from his blood. He recom cilantro, yum, and spirulina to cleanse the blood. Root canals, IDK????

    LDN is my next chemical adventure, IF I can get a rx. Many MS'ers claim it relieves the symtoms. CURE? I doubt it, the damage is done. Cure BC?? or AIDS?? IDK, maybe, perhaps. There are cetain conditions that cannot be cured but controlled. LOW DOSE is the key. My nuero is conservative so I'll have to see another dr. Will see next week.

    milehighgirl, I see Dr Wong for his chinese herbal TEA which is made by a pharm and I doubt that they will tell me the formula in the TEA. It does taste alot like Essiac Tea. I am visiting my son in Manhattan today so I'd like to visit the pharm and I can ask?? They sell the herbs dried, or they will cook and package them for you as a TEA, for a price AND SHIP THEM ANYWHERE. Cost..10$ a day. I count the TEA as a meal. I think herbs are no or low calorie??

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited August 2013
    Options

    I had all my mercury fillings removed over 30 years ago and replaced with white bond.  Was diagnosed with breast cancer only two years ago, so I am like some of you in thinking that - while I didn't want mercury hanging around in my mouth - I don't think that it contributed directly to breast cancer.  Also, it was only two years after breast cancer that I needed to have a root canal... on a tooth that my dentist told me nearly twenty years ago - was going to, eventually, give out and need one.  No surprise there, pre-existing situation, so - based on my research and personal experience - I don't think root canals have a causative effect on the development of breast cancer.

    When it makes sense, I prefer to go the "natural" route.  I prefer whole foods because they are more nutritious.  Do I use processed foods?  Sometimes, when time demands it, but I try to shop "mindfully" when I buy canned goods.  Ideally, I love to do my own canning; there just isn't, always, enough time.  I do use some natural supplements, when appropriate, to keep promoting good health.  I take Vitamin D and melantonin (largely, because it helps with raging insomnia, but I have been closely following the melatonin-breast cancer articles).  I drink green tea because I like the taste and I enjoy the civility of afternoon tea.  I keep following the research on parabens because the jury still seems to be out on the issue, but there is enough data there to keep me coming back to keep an eye on things.  I've already decided that - for me - the link between deodorant and breast cancer is too weak for me to worry about.  But I will periodically check in to see if anything new has emerged.

    I don't believe that "conventional" and "alternative" need to be mutually exclusive; there is so much in both that overlap.  When we argue about the definitions of "alternative" vs "complimentary", I feel - personally - that we're just arguing semantics.  Mother Earth is wonderful, nurturing, and alive, and provides us with everything we need... we just have to sort through all the man-made noise and confusion to find it.

    Blessed Be

    Selena

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
    Options

    I think that even with mercury fillings removed and replaced with white fillings, the white fillings I heard have aluminum concoction?  Soooo, I don't know which is the lesser of two evils?

    As far as treatment, I think choosing the least toxic is best, regardless if your immune system survives chemo or not.  I would never choose chemo, personal choice.  I had read chemo can encourage cancer stem cell growth, which could be why it recurs like wildfire years later?  Who knows, all a crapshoot.  I would definitely try IPT if given no other choice.  Healthy immune system combats all disease, which is why I am on Dr. Wong's herbs/herbal Tamoxifen...trying to shy away from all toxicity and side effects.

    I am going to try LDN as well...it's NOT a cure but another way to get an optimal immune system...there is an awesome Yahoo LDN group with much information...they don't tout a cure.  LDN can keep mets away, but have to be careful not to go above 4mg daily.

  • Momine
    Momine Member Posts: 2,845
    edited August 2013
    Options

    Joelle, everything I have read says that there is no evidence that LDN can keep mets away. Do you have anything that explains how it is supposed to do this?

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
    Options

    Momine...I am no expert on LDN, if you're really interested check out the LDN group on Yahoo!

  • jojo68
    jojo68 Member Posts: 336
    edited August 2013
    Options

    I also know a chemist on one of my Yahoo groups who has made vaccines in the past to keep cancer away successfully....I will not name him, if you join some yahoo groups you can figure out who he is...I also ran across this article...

    http://www.thedailybeast.com/newsweek/2011/12/11/could-this-be-the-end-of-cancer.html