How does one Aproach Onco about Alternative threatment
Comments
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I see my Onco (only for the 2nd time) next week. She is recommending No Chemo for me....And No Tamox since its a health risk with my Heart.
I have research some things I would like to try. (been a while since I read- Recovering from surgery.) So I am going from memory not my notes. I am considering Iodine as a Natural Hormone treatment, Tumeric/Curcumin-need to see if I can take this with my Plavix-probably cant) CoQ10 & Kelp...There may be some other things I have forgotten.
How does one bring them up with their Onco....How many Oncos are opening to hearing about alternatives.
Guess I better work on my Notes for my Appt with her next week too.
Thanks,
Pam
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Start nice but stand your ground. I finally had to say "I'm not asking for your opinion but letting you know I'm going to be using this supplements." He was not happy but he backed off. After that it was don't tell me I don't want to know.
Good Luck
Flalady
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I am not certain you need to ask your oncologist about alternative therapies. They are experts in what they do.... treat us with chemicals! Their education does not cover alternative therapies, unfortunately. You (we) as women , usually have quite intuitive minds, if we would just listen to our inner being. Trust that the information you need will come to you and you will feel at peace with it. If you don't feel at peace with any particular therapy, then, perhaps it isn't right for you.
Do lots of research... there is an abundance of information out there. Check out kelp and iodine, though because, Kelp basically is iodine. I would check out Lugol's iodine and read about that. Also, do you have any thyroid issues.... I do and I am finding an abundance of info regarding a thryoid/bc connection. Actually, my oncologist happens to be a person I knew for 6 years in a different environment b4 needing her expertise and the first thing she said was she thought there was a connection to my thyroid!
Again, just go with you heart and pray about it. It will and can happen.
I have a friend who had stage 2 b/c (non invasive), had surgery, and then refused any traditional therapy and went holistic. That was 10 years ago and she is healed. If you are interested in any of the things she did, I will be happy to share with you. I am certainly planning to follow her footsteps. I, however, had invasive with cancer in the lymph nodes, so I am comfortable using the expert oncologist to rid my body of that b4 surgery and than taking over from there.
God's Love, Healing Powers, Grace and Wealth flow to us in avalances of abundance!
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Pam,
I found that if I had some supporting documentation as to why I am interested in a particular alternative that it helps. MD Anderson's website (http://www.mdanderson.org/) and Memorial Sloan Kettering's website (http://www.mskcc.org/mskcc/html/58481.cfm ) have been helpful for me. My previous onc's PA actually recommended the Sloan-Kettering site.
I also visite www.epocrates.com for drug interaction information. Some drugs, as you know, can interact negatively with supplements. This site is the one my PA used on her blackberry right in the exam room with me.
I have found that if you have information from sources your onc considers reputable, they are much more likely to entertain the idea of alternatives/complementary therapies. I have also found that my onc has had information about positive/negatives with cancer therapies and alternatives that would not necessarily be easy for me to locate myself.
I think it really comes down to the individual onc. Here's hoping yours is one that is willing to support your choices!
(((HUGS)))
Diane -
Pam,i did mention coq10 to my med onc. he said I don't know anything about it...but my breast care surgeon seems to have heard it all and when I mention to him the things I have found out about alternative, he just gets this big grin on his face....but he too emphasizes traditional main stream medicine.
Carol it is good to hear about your friend...I'd be interested in the route and alternatives she uses. my sister went through chemo d/t lymph involvement...but has not used hormonals...but supplements alternatives.
Thanks
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Flalady-Thanks- that is what I will do...When I thought about it- she is not recommending any treatment for me...So she certainly should be fine with what I have decided to use on my own...But who knows.
Carol1949- I think many of us would be very interested in hearing about what your friend did 10 years ago... Want to tell us?
badboob67-thanks for those links. I hadnt seen them before. Anyone have a Link for Iodine like the ones Diane had for Interactions? I cant find info on that.
amberyba-Thanks for your reply. So many Drs are against alternative medicine...Its to bad... $$$
Pam
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Deja,
You can just tell them what your plan is. They usually are not informed about alternatives-- or claim they aren't because it would damage their reputation.
My friend's was told by her onc: "Don't ask, don't tell."
I have found Sloan Kettering's database and some of the others to be inaccurate, biased and cherry-picking.
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Amen anomdenet...mainstream sites are not always the best place to look. Use them as a guideline not your finally decision maker.
Flalady
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I just looked at the sites and their news articles section was old and not recently updated. I also had difficulty finding the section about alternative treatment on a site. I guess maybe because I was looking for information about supplements, food and diet and not about meditation.
What and where is the best way to find a good physician for alternative medicine? I know they advertise the Cancer Center of America but unless you were a patient there you cannot use their other facilities, i.e., post chemo treatment support regarding diet etc.
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My suggestion would be to seek out a consultation with an integrative oncologist on supplements, alternative approaches, etc. That way you will have guidance in your decision making regarding adding alternative treatments.
Supplements and herbs are not "weak" medicines just because they are sold over the counter.
Most integrative oncologists treat their patients with the usual chemo, radiation, hormonals, etc., and also with diet, exercise and supplements. Most of them have a nutritionist on their staff, as well as acupuncturists, Reiki practitioners, etc.
What area are you in Pam? I know I use an integrative onc in CT, and Robin Wendy was very happy with the integrative onc she was using out on LI, NY.
My onc prescribed an entire protocol of supplements, and his nutritionist helped me with planning a healthful diet both during and after chemo.
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My friend lost her sister to b/c 20 years ago and also lost her father to cancer. She told herself that if it ever happened to her, she would "find another way".
When she was diagnosed, she did have surgery, and then met with an oncologist, who she says talked to her as though she didn't have long for this earth. No tests, or scans were ordered, just the plan of tx. She then got 2 other opinions b4 doing anything. She did end up in a major cancer tx center and had another surgery for clear margins, but then declined any further treatment. They offered her nutritional and alternative suggestions as well as a spiritual advisor....then she went from there!
She listened to many tapes, (Deepak Chopra, Andrew Weil, etc. anyone who spoke to her heart). She had Reiki, massage, did yoga, took and deleted supplements as recommended by an iradologist and an intuitive healer, as well as what the cancer center suggested, based on her blood work. (Our bodies change and need different supplements, as our cells change). She did sweat camps, and talking circles, read The Artist's Way by Julie Cameron, & You Can Heal Your Body, by Louise Hay.... had counseling, became a 90% vegetarian. Currently she takes 2 different Blue Green Algae Supplements which she gets from Simplexity Health. She also takes a bone builder, called bone up, vitamin E; She eats ground flax seed, and still does retreats.
It is now 10 years and she is still cancer free!!
Sounds doable, right?
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Carol, what a great inspirational story about your friend. Horray for her! I was lucky to hook up with a 10 year survivor after my surgery and she also inspired me. She too went the holistic route, and in spite of a lot of stress in her life is doing great. As a dietician, she gave me a lot of advice and I am conviced that cleaning up my lousy diet is my best defense. Those of you who are lucky enough to have oncs who use integrated medicine, I really envy. Mine wanted no part of it. Although I really liked her, I have not been back. I found a chiropractic doctor who practices holistic medicine with an emphasis on nutrition. She is able to do exams and test my blood to make sure everything is in balance. I am not taking any drugs so I am relying on supplements and exercise to balance my hormones and my last blood test is looking good.
My point is that if you choose to go the alternative route, to try to find a doctor who will guide you. You may have to really look, possibly in the chiropractic field but they are our there.
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Linda, May I ask.... if your insurance pays for your blood work as ordered by the chiropractor?
I know that my insurance will pay for chiropractic, where as I don't think most insurance will pay for any other holistic approaches that I know of.
Also, I borrowed a book from the library, called Beating Cancer With Nutrition by Dr. Patrick Quillin. It is worth checking out. He is a former VP of one of the major Cancer Treatment Centers. He covers nutrition as well as supplements... and he doesn't "sell" them! In most instances he will suggest 3 possible sources. He even uses a star approach to prioritize what to start with.
I wish more people would participate in the holistic area of this site!
Thanks for your input.
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Having always been into nutrition and healthy living, I was one of those people who said, if I was ever diagnosed with cancer, I would never succumb to traditional treatment. Well, all I can say now is, never say never, and thank God I did go the traditional route, and here's why.
Like I had so many times when others had serious illnesses, upon my dx my dear health-conscious friends started showing up with a wide range of literature on non-traditional cures. But, the more I looked at those diets, supplements, clinics in Mexico, etc., and the more I learned about bc being not one but many diseases, the more I came to believe that one "cure" could not possibly work for all bc. Oh, maybe if caught extremely early, and maybe if you hadn't been paying much attention to your health up to that point, so that there was plenty of room for change. Maybe. But I didn't fit either of those situations, and I wasn't willing to risk my life on it. Was I happy about getting a lumpectomy? Of course not. Was I happy a week later when I was told they hadn't gotten it all and I needed a mastectomy, and that chemo was now going to be necessary, as well? No! But with each twist and turn, it became clearer and clearer to me that no amount of green tea or high PH water or anything else people had sworn would "cure" me would do the trick. Luckily, after I got the news that I probably needed a mastectomy, I went to a major breast center (UCLA) for a second opinion. And, two very interesting things happened. First, their high tech MRI machine found two more tiny invasive lesions in the same breast that an MRI elsewhere two months earlier had not picked up. Then, when I had my mastectomy w/complete reconstruction, while finishing up for the PS, the BS took a tiny extra sliver of tissue to neaten a border, as she later told me -- and guess what -- another microscopic tumor hiding in it! If I had bought into any of the alternative cures at any time prior to my mastectomy, I would have been walking around with 3 invasive lesions left in my breast.
What I think is equally interesting is that UCLA actually has a Department of Integrative Medicine, and a Complementary Cancer Program that incorporates everything from nutrition to supplements to Tai Chi -- and they encourage you to take advantage of it. For someone like me who has always gone the natural route, I feel very fortunate to be able to seek advice now on complementary therapies from doctors and Ph.D.'s, and I hope this will be a wave of the future.
Will I continue to look for food and holistic cures for minor aches and pains? Of course. Will I continue to watch the research being done on curcumin (which I actually took prior to my mastectomy, until someone asked me how I could be sure it wasn't making it worse), grape seed extract, and other "natural" medicines for real proof of their effacacy? You bet! But will I gamble by taking only unproven things like these with such a complex disease, and gamble that my bc won't come back -- when if it does, it's incurable? Well, obviously not; and obviously, this is something I feel quite passionate about.
So, now you will find me mostly on the August 08 chemo board here -- somewhere, I NEVER thought I would be, no less glad to be!
Deanna
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Deanna, while I agree with you completely that we need to beware of all the "miracle" cures out there, prevention is a totally different thing. You are lucky that your doctors use an integrated approach. Mine did not. My hospital is all about profit and there is no profit in prevention. Since my treatments are over, I wanted some guidance in making sure it did not come back, and my doctors just kinda shrugged and said, we think your best bet is to take this drug. When I said I did not want to, they pretty much said adios. So I am very happy that I found a doctor who is helping me. Yes, Carol, my insurance covers the blood test. I have a huge deductible which I passed long ago, thanks to radiation, so I figure I am going to do everything I can the rest of the year to get my system in order.
Deanna, I know it is rotten that you tried to do everything right and still got BC. Even with a proper diet and exercise, our hormones can get the best of us at times. I just read a book called Micro Miracles that says, we all have cancerous cells in us and when our immune systems are compromised, it allows these cells to grow. You might try to find the book because it talks a lot about the power of enzymes in helping chemo patients and I find it makes a lot of sense when it talks about how we might not be getting the right nutrients, even when we eat well, because our body chemistry may not be processing digestive enzymes correctly.
I hope you get through your treatments as well as possible.
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Linda - I'm totally in agreement with you on prevention and life long health. And I'm glad to know that you've found a health care provider who understands this. It is a shame that the majority of traditional doctors are not in tune with prevention, and you can often tell just by looking at them that they haven't a clue about what vibrant health really is. Those are the doctors I run from, too!
I hope anyone reading my post understands that I am not opposed to alternative or complementary medicine. I just wanted to share my own experience - coming from a place of total distrust in traditional medicine (especially big pharma drugs, which I've never taken), and taking many weeks to come around to agreeing to traditional treatment - and then having some things happen that, in retrospect, made me realize, had I gone an entirely holistic route from the start, or even a lumpectomy and then trusting I could heal my body's imbalance with a holistic approach (which I agonized over), I would have had the deck more stacked against me than I would have ever realized. I hope that makes sense. But everyone has to do what is right for them, and that is why I urge women to take the time they need to research all of their options, as well as find doctors they totally trust.
But I'm with you 100% on prevention, and I will definitely pick up the book you've mentioned.
Take care - Deanna
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Deanna,
I understand your thoughts and respect your decision as well. You see, since my cancer is in my lymph nodes, I also am using traditional therapy and surgery. However, in addition, I will use a holistic approach, beleiving that it is indeed affected by the immune system.
My goal is to strengthen my immune system, so it can seek out any stray cancer cells and destroy them as it is supposed to do. I also found a book by Dr. Patrick Quillin, a former VP of a major cancer treatment center, who explains all of this in detail. He doesn't sell any supplements, even rates them in importance if money is an issue.
Linda, he also talks about the enzymes as well. Please tell me who the book is by that you are talking about.
I did mention Quillin to my oncologist and she had heard of him and approved of his concept. She knows me personally, and said she thought for "me" less is more! (Meaning, the less the medical team does, the better for me.)
Of course, I am almost finished with chemo, which yes, I did due to the lymphs, and then I will have surgery. I am not going forward with my head in the sand, rather, I feel I am taking the "best" of what is available, to my knowledge.
Any information we share with each other is appreciated. I wish all of us to have a healthy future! If I learn one thing from another b/c sister.... it isappreciated!
Peace and Blessings,
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You know if chemo if not an option and tamoxifen is not an option it looks like nutrition and holistic approach is what you have left to do. Anything that strenthens you immune system is bound to help.
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Carol The book is called "Micro Miracles, Discover the healing power of Enzymes", by Ellen W. Cutler, Dr with Jeremy E Kaslow, MD. The book was printed in '05 and cites lots of studies, so I have faith that it is well researched, not just opinions. It really gets technical but I found it to be a great read.
When I was told that I had cancer, my primary doctor told me that I should not do so much reading, I should just listen to my onc. and do what she says. I have a lot of respect for her, but she knows that I read a lot about my health concerns, so her advice really upset me. I am an avid reader, and while I know that books can be dangerous when we try to diagnose ourselves, without the help of modern medicine, I also know that doctors can't know it all, and they do not have the time to get to know each of us personally, and cannot possibly understand what goes on in our heads. All I know is that all the books I have read have helped me to understand my cancer, come to terms with it, and find a way to good health. I feel better now than I have in years and I know it is because I am educating myself on what it takes to be healthy. During the Olympics, they did a story on Chinese medicine and their combination of modern and ancient treatments. I hope that our system will someday do the same. Nonetheless, when (or if)I finally get around to going back to my onc, I will be armed with my own statistical proof ( blood tests, thermograph, etc) that good health can be obtained with diet and exercise, and not always with a pill.
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My onc has been great. He knows I am taking Turmeric and when my hair started falling out due to Arimidex he listened to my suggestion about using Nizarol shampoo and a topical anti-androgen. He gave me a prescription on the spot. He is open to ideas and nutritional therapy. He and my primary care doc have both tested me for vitamin D levels. I was low and am now taking 1600 IU a day. They both said that it will help protect against osteoporosis as well as boost my immune system. After reading all of the posts on this thread I am so grateful to have the care I do. Best wishes to you all for getting through to your oncs.
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I think it is great that many brave women here realize, that you do not have to choose either [conventional medicine] or [alternative medicine]. Combine whatever you think works best, and beware of anyone [conventional OR alternative] who claims something like, "this is the only way to go."
Unfortunately we do not yet have THE answer to BC. None of the existing solutions are perfect. With all due criticism to drug companies or charlatans, I think the majority of available treatments and cures DO work, at least to some extent, for some people. Take advantage of whatever's right for you. Do everything you think might work.
I'd like to recommend two books: the first is called Anticancer, by David Servan-Schreiber. I think it is already available in English [we read the French version a month ago].
The second is the China Study, by Campbell and Campbell.
Both are good reads. They're very detailed nutritional guides for anyone who wants to protect herself from BC, and be health in general.
May you all be healthy, well, and happy!
Chuck
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Thank You, Linda.... I appreciate the information.
I go in the chat rooms, and though I love the support and fellowship.. I think some of the people get frustrated with my input regarding holistic approaches. However, in thinking about it... I also think that they interpret it that I am suggesting to use ONLY holistic approaches, which I am not doing.
I know everyone has their comfort level, but if I had stage 4 cancer with mets... I would want to use everything available for my quality and quantity of life.
Thanks for keeping this site active... I notice that you are very generous with your input.
Prayers, for healing and contunued good health... Keep up the fight!
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I have read with much interest all of the holistic approaches women have taken. However, I haven't read that any of you are taking Graviola. I first learned of this from Dr. Russell Baylock's link on Newsmax.com. He sells an email newsletter but occasionally he will write a full article on a product. I found Graviola at Vitamin City in liquid form using a dropper. I began taking this early in the year. (2008) A dropper full in my black/no sugar coffee. After a routine mammogram in May, I was recalled for another mammogram. At that point I increased the dose of Graviola to several times a day. I was diagnosed in July with bc. The ultra-sound indicated two tumors; one in the breast and one in the armpit. The core biopsy indicated Stage 1 in the breast and benign in the armpit. I had surgery to remove the tumor in the breast and the doc took a sample of the node in the armpit which was benign.
All of this being said, I will never know if Graviola is the reason I was stage 1 in the breast and benign in the armpit. Maybe if I had been taking more doses during the day of Graviola, my breast tumor may have been benign also.
There are several websites on Graviola and studies that have been done. detailshere.com/graviola is one. Good luck to all the alternatives you have chosen.
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Deanna,
You are absolutely right.. I also do NOT believe in "miracle cures'. However, Patrick Quillin explains how to use supplements and nutrition along with traditional therapies which is exactly what he did through the Cancer Centers He worked for. There are many supplements which can enhance the chemo while minimizing the bad side effects. He explains exactly how they do this and gives examples of people who had better quality and quantity of life as a result of this. It is using the best of what is out there that will beat this "dis" ease. It is important to find someone who can analyze the blood, and or saliva iridology or whatever you are comfortable with to find what supplements may be beneficial to our needs. For instance, they say that blood test is the least accurate way to test thyroid. Dr.'s used to treat it by symptoms until synthroid took over the thyroid world.
So, try not to give up on the hope of a healthier life. The traditional therapies can work with holistic therapies for the ultimate in health care
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I'm so glad to read everyone's input on this topic. I'm finishing 6 rounds of chemo tomorrow, so I've "done the work" as far as that goes, but I'm fervently looking for good info with which to arm myself against my onc. pushing Tamoxifen down my throat. So far, iodine and vitamin D are the main things I plan to go with--one Iodoral tablet and 2000 iu of Vit. D. However, I strongly suspect that the onc. will not give a fig about this and I may end up not going back to her after I reject the Tamox. (I already declined to be in a study regarding the chemo, so I guess I failed to bring in that extra money for the office!) I'm a little stumped about finding the right kind of doctor who will work with me on this--the different titles: holistic, naturopath, chiropractic, etc..... In any case, I still have another mastectomy ahead of me whenever my surgeon says I'm ready post-chemo (my choice, nothing was found in this one but I'm taking the target away), so I'm not turning my back totally on traditional drs, but I believe God did put things here for us to heal ourselves with and why not investigate? That being said, I also believe a lot of cancer is caused by things we've created ourselves to scum up our environment, but that's another topic.
Have a great day everyone~
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