Chemo and Breast Cancer
Comments
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I had hoped this alternative forum to be a place where we can discuss issues such as cancer treatments. Many of the alternative women do both conventional/alternative and come to the alternative looking for another way to treat our disease. I guess that why it's called alternative.
Some of us have made the choice not to do chemo due to risk factors, our health, age or whatever our reason is..we don't feel comfortable or feel chemo is right for us. Our body, our choice. We find support and encouragement with others who've made similiar choices. We are not here to tell those who choose chemo not to. It's ok for us if women choose chemo...a lot of our friends from bco are treated with chemo and tamoxifen. We are here to support and to encourage them....and they us. But, there are those who group together who come here to make us feel badly for our choices. There is a holistic forum for them to vent about us, which they do to make us look bad or like wacko's. If it makes them feel better to make fun of us...let them do on the holistic forum...but leave the alternative forum to us to share, learn from one another and find support. Is it too much to ask for that?
I don't think we should be putting someone down for smoking, as it's brought up a lot in regard to Leia, no more than we should judge those who eat fast foods, who are obeise, who drink beer or wine... or are sugar junkies. There maybe reasons to why not to have certain vices...but there is no excuse for polking fun at someone for having one.
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I agree completely Eve. With everything you said. And Princess as well is constantly goaded by these same women until she says something in frustration and they then act like victims. I also don't appreciate them calling us "nut bars" . I thought name calling was against the guidelines or does those only apply to some..
I thought this forum was supposed to be a safe haven. -
Evebarry~
You said "we are not here to tell those who choose chemo not to." Well, that is exactly what Leia does. That is what I find upsetting.
As for Princess, she was very rude last night. No excuse for what she said.
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Hi Evie
KatyDee, i love my osteopath ! Have been seeing him since the early 80s when i was in such bad shape that I could not use my left arm at all for the pain. Three sessions was all it took for me to feel brand new. That pain never ever came back. He was one of the first osteopaths in my area, also an M.D. and lectures as far as Germany. Sadly, he is getting old and the last time I saw him, I noticed that he could not adjust me as easily as he used to
I will have to shop around for one of his students, but having been treated by the master, it won't be easy to find someone I can trust. You are mighty lucky that your BS is also osteo, that's a great combo -
Hi KatyDee and Medici,
I am more than a little envious of your experience with DO's. My internist and his NP are among the best, but my left arm (lumpectomy side) has gotten worse and worse with time despite twice doing PT. I've had testing of the elbow to the wrist by a physiatrist and the tests all came out negative. This year I had the arm x-rayed and that came out entirely negative. But the arm continues to get worse. It is as if the biceps or triceps has been torn off. But the surgery I had was limited to chest wall musculature and one single sentinel node under the arm. Another "SE" from treatment that was not on the list to evaluate prior to treatment....
In addition, the IMRT rads I received on that side for the lumpectomy left me with radiation necrosis, and gradually most of that breast has become more and more painful to touch. Another "SE" from treatment that was not on the list to evaluate prior to treatment....
There are no DO's where I live. How should I best go about choosing one to see when "visiting" the city next time?
A.A.
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KatyDee - no one has called any of you 'nut bars'. I eat a nut bar (for real) every afternoon at work - no hidden meaning at all.
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Ang, From what I read her original post merely gave her opinion and choice. I missed it I guess, because I read no words where she said do not take chemo.
Princess has been so patient in light of rude things said to her. I didn't read where she was rude, but I can understand in light of all the harassment she's gotten.
There are rude things said to alternative ladies all the time, and a lot have been chased away from the bco forum...which is sad because they offered so much.
I would love it if we could find common ground in that we are fellow bc sisters and support one another no matter what choices we make.
It would be nice if we could discuss chemo and other breast cancer treatments, conventional or alternative without stone throwing.
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I agree evebarry. It is a shame that so many of these discussions turn nasty.
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Medici, just to clarify, my bs is a DO, not a DC. She practices medicine only. AA, osteopaths are not as plentiful as MD 's although that is changing now with the trend toward treating the WHOLE body in relation to health and diseases, rather than just the isolated disease or injury. Osteopaths have as many if not more years of education and training in medicine and have the same rights and privileges as an MD. To find a DO in your area, you can try www.osteopathic.org to find listings of Licensed DOs. I think most DO practice general medicine, but there are many that specialize like my bs.
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I'm not against chemo and I'm not for chemo. I am against coercion regarding my own personal body. Apparently chemo saves one person and can destroy another. I haven't read anything - unless I missed it - where Liea says anything other than she choses not to do chemo. It's her body, it's her business. She has the right to decide what she's going to do with it. What's the issue with the Pro-Chemos?
I often think the Wizard of Oz turned out to be human and just as lost as Dorthy. When you ask people not to look behind the curtain - I believe, it's only out of fear. If the Wizard turns out to be just as lost as the rest of us, where do we go from here Dorthy?
Questions are never wrong and we'll never find the answers for a cure without them. Is the only answer Chemo?, or are there other ways of dealing with our circumstances that haven't been looked at because we either have no choice or we're afraid to look towards new concepts or ideas.
Death itself is such an unknown. Frightening really when we don't know what's out there. More so when there are those we leave behind unattended and alone. I've had friends who've fought to live to raise their children and they did. I've had friends who've fought for a few more years after their dx, to make sure their houses were in order and their mate wouldn't be lost. I've had friends who've passed in just a few months. I can see everyone of their faces in my mind as I write this and I miss them all. Never-the-less each fought for what they believed in and wanted to accomplish before they let go. Some of these friends did chemo, some alternative methods, and some just seemed able to accept their situations. Thier choices, their lives and their deaths. What to do with the circumstances we're handed is the only true choices we have in these earth suits. Be proud of the sisterhood. We're an amazing species and it's such a great opportunity to get to know and understand one another. God Bless and Big hugs to all.
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I have been able to post quite well on both conventional and alt sites, but I try very hard not to mention my preference for alt treatments when I'm on the conventional sites, because it would serve no purpose. I'm not there to convince anyone that my options are a better choice. They just work for me...that's it.
If someone is going to attack me personally, I just ignore them, because it's their problem, not mine. On the other hand, if they make statements that I know to be not true, as someone did the other day, I feel compelled to state the correction and I do so in a matter of fact way. I would expect the same in return.
Why anyone would feel the need to attack anyone on one of these threads is beyond me, unless they have another agenda altogether. We are all here for one reason only, to educate ourselves about bc, and to share with others. This has been a lifesaver for me as I've gone through my time from dx to now.
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Nancy91355~
I am sorry but I see her post differently than you see it.
She starts off with an article that says "chemo causes brain damage."
I know this is the Alternative forum but anyone can read and post here.
If I looked for an article against vitamin C infusions or coffee enemas I am sure I could find one and post it in the Conventional forum.
I choose not to do this because there is no reason for it except to upset those who did vitamin C infusions or coffee enemas.
Her post does not seem to want to bring women together, IMO.
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To me, lack of respect says it all. If one can't be gracious enough to show respect, starting with themselves, it's that they were never taught the meaning of the word. Unfortunate for those of us who go through life with sincere compassion for humankind and have to rub up against those individuals
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"Forum: Alternative Medicine: Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment.Please share your experiences here, but please also refrain from providing individual medical advice"
It seems, IMHO, that posting attacks AGAINST standard, evidence based treatments does not follow the purpose of this area of discussion. Where is the discussion on experiences using alternative treatments?
Is the OP trying to validate her decision based on choices made AGAINST standard, evidence based treatment, rather than making an informed choice FOR alternative medicine? Where is the discussion on experiences? -
That is what I want to hear about, alternative medicine. What do others do instead of Tamoxifen. If I so choose not to use Tamoxifen, what else has anyone tried.
I am one that juices my vegetables, I also do a lot of the Gerson Therapy for both my cancers. I want to hear more about natural things others have tried that make you feel better or help. I also found my Vit. D3 was very low with my CLL, I had leg cramps constantly, after reading from others about D3, I had mine checked, I am now on 50,000 IU's X 2 times a wk. just to get it back in the normal range after almost 2 years, it's still low, oh and my leg cramps are gone, haven't had one for over a year now. Cancer patients should be in a higher range of around 70 to 100 I am told by my doctor. I also have IV's of vitamines from my doctor, I was also shown how to give myself Vit. B12 shots once a wk. First be tested for these, reg. medical doctors don't usually do these kind of tests, they are important to cancer patients.
I have other things I do, but I have to go to work and I'll post more later. I hope others post things like this that may be of some help to us with cancer.
Here is a article, one of many, I found of Tamoxifen that I found interesting, the decision is yours only:
http://www.all-natural.com/tamox.html
If I posted this in the wrong place, I'm sorry.
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http://www.cancer.org/Cancer/news/breast-cancer-chemotherapy-and-brain-function Ang7- The American Cancer Society appears to agree with the statements made in this posting. Vit C infusions are being researched and coffee enemas are determined through research not to be an answer to cure cancer but more comforting to a patient. I don't see how you lump the three together. I think this posting has brought many women together who respect and appreciate your opinions as well as Leias'. Your last sentence seems to intimate a need for all women to agree on one cure for all BC patients. I'm afraid that's just not going to happen right now. There simply isn't a cure, as yet, that allows for that. Learning to respect one another's differences, and caring anyway, is the only way women can come together. We're all unique and important in the circle of life. Hugs and warm wishes for today.
Hi Nancy- I'm going to have to find and read your story. I'm interested. Power in numbers can be a very comforting feeling to many of us, and I think some opposing forces might need to feel that right now. Age, experience, lifestyles, and personal circumstances can cause a lot of confusion with this insidious disease. Fear of the alternative - death - is usually the motivator. Sometimes we confuse the real issues with the individuals we share with.That's an issue even children are dealing with in this world full of cancers. Was sorry to hear your experiences were so hard on you. I just hate reading some of the realities, and insensitivities of our times. I hope you're doing okay today and things are better.
Kaara- I'm with you on that. The comfort zones for each of us matter. I'm trying to remember that. It can prove the most difficult path we walk. Hoping your day is if not FABULOUS, at least a good one.
Hey hey hey evebarry..Hugs and hugs.
Peace Out and Hugs...Christmas is a comin'! Don't find yourself on the naughty list. LOL
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A.A. I am sorry you're having to deal with significant post-treatment SEs too
I am convinced an osteopath could greatly relieve your condition"Osteopathic manual practitioners use their hands and provide a gentle "manual" approach, consistent with the osteopathic philosophy, to identify the causative factor of the problem and restore order to all of the systems: musculoskeletal, respiratory, cardiovascular, digestive, reproductive, or nervous system"
My osteopath is a member of the American Association of Osteopathy http://www.academyofosteopathy.org/node/22573
http://www.aacom.org/ABOUT/Pages/default.aspx
The school at which he teaches in my area offers treatments by students, at a lower rate. That could also be an option for someone who's insurance does not cover this therapy.
KatyDee, you had me confused there for a minute Lol...my chemo/tamox brain...That's what I had understood that your breast surgeon had also specialized in osteopathy
ETA Jazz, I really enjoy reading your posts sister
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Medici, thanks for that explanation of your DO. I thought you were referring to a DC. Your DO has a specialty in neuromuscular medicine. No, my BS is an oncologic surgeon who only specializes in breast cancer and she is a DO. One of the things I like about her and there are many, is that periodically she sponsors a wellness night at her office for her patients and has massage therapists, reiki, accupuncture, relaxation and nutritionists among others. She specializes in breast cancer but believes in the whole body approach to healing. She is a perfect example of a doctor who not only practices conventional medicine, but also promotes complementary AND Alternative therapies. I hope to see traditional medicine move in this direction in the future and with the increasing number of DO's, I think we will see this shift of philosophies soon.
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Vicki, I'm seriously considering discontinuing Tamox and replacing it with DIM. Here's some basic info.
http://www.diindolylmethane.org/
"This phase II/III trial studies how well diindolylmethane (DIM) works and compares it to placebo in treating patients with breast cancer. DIM may slow the growth of tumor cells and be an effective treatment for breast cancer."
Many sisters on BCO are using DIM. Try the original Natural Girls thread (it is sooo huge though) or search DIM here and tons of info will come up
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Medici,
Someone posted that there are other threads about metformin on the forums... but I want to post this in case you or others are interested.
The breast is an endocrine gland. I believe the most effective thing we could do to get better treatments would be to train endocrinologists to understand that diseases like thyroid disorders or pancreatic disorders are not completely separate from cancer and need to be treated in conjunction with a thorough understanding of cancer in terms of the actions of mitochondria. In addition, I firmly believe that there should be an endocrinologist sitting on every tumor board, with equal authority on that board to the oncologist on that board.
A.A.
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KatyDee, I remember how the battle was hard won for chiros and osteos to win recognition. In my corner of the world, acupuncture is now being taught at the collegial level, so yes, there is hope
A.A. thanks for the link, hopefully we can post our info wherever we wish to post....filing is not a priority of mine, Lol I have info somewhere.....about Metformin.... (a drug, by the way)....not so good info I recall, will try to find it.
I totally agree that the multidisciplinary approach is a long time coming. I'm convinced that my pancreas, liver, thymus, etc. let me down at one point
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Scuttlers: I respect your strong and often funny personality, But please try to understand that in order to go against a majority, standard protocols, your oncologist, your support group peers, media hype, deceptive statistics, the comfort of believing in your doctor, etc etc...It is necessary to have discussions regarding standard treatment in a not so positive light, and very helpful to some to share the information while formulating their decisions. Thats all. It isnt easy to make the decision to forgo standard treatment. No one is having fun here. We are discussing life threatening illness. And we take seriously the potential outcomes of our choices. Discussion is helpful. I would only ask, or wish, that those who choose a conventional treatment, would be just as honest about the limitations of standard treatment, (not only in these debating threads, but in their own treatment threads) and not 'promote' it so much without balanced information too, I think if that were the case, you would find the "warning!, chemo!' posts would occur much less often. I hope, eventually, people come to understand WHY we are looking at and discussing alternatives, and often applying the protocols, (sorry to interupt your discussion all)
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That's life, I would like to see some discussion on experiences (good or bad) of the alternative therapies and not just the "I did this because the other choice was bad". Let us know what works! Let us know what is positive about some of the alternatives. Let us have a discussion on the experiences of alternative therapies.
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vickilf: Great article! Thanks for sharing. I was one of the ones who was given DES back in the early 60's to prevent miscarriage. My daughter has to be really careful because of it, and it might have caused me to have bc, along with birth control pills and HRT therapy!! Now some onco wants to give me Tamoxifen and finish me off. Thanks, but I'll pass.
Now that I've been taken off both bioidentical estriol and progestrone because of my dx, I am wondering if that was the right decision. As soon as my surgery is done, and I know exactly what my dx and treatment options are, I am going to revisit that issue with my integrative doctor.
You can bet I've printed the article and it will be in my notebook, along with all my studies about chemo and radiation.
Medici: I am now going to review those two links you posted. Thanks so much!
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By the looks of it, most sisters currently on the alt forum are exploring and exchanging (emphasis added). The ones who would have been extremely helpful to us have apparently been driven off the board. Leia is trying (emphasis added) to testify to her FOCC experience, a brave one indeed. Impositive has also been trying (emphasis added) to share with us her experience with the Vit C protocol, but I have not seen her lately, I wonder why
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scuttlers: I can give you several experiences. My co worker was diagnosed about 10 years ago with Mysthenia Gravis, a serious auto immune disease that causes the muscles to waste away. You slowly lose control of the ability to speak, breathe, and swallow, in addition to a number of other issues. She was getting worse and several times she was close to death. Conventional medical treatments were not working, so she went off all drugs, and started a holistic approach...vegan diet, exercise, tai chi, qi gong, and meditation. Today her disease is in complete remission and her conventional doctor told her to keep doing what she's been doing because it is working. I have another acquaintance who lives close to me, who is doing alternative treatments for her bc which has spread to liver and brain, and she is still alive and doing well. It is my intention to speak to her about which treatments she is doing, and when I do I will follow up on this thread.
Someone once asked me where my "evidence" was that alternative treatments work. I said that the people who are alive and well as a result of alternative treatments are enough evidence for me. The testimonies are out there, you just have to look for them.
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Nancy91355~
I'm sorry you did not get what I was trying to say a few pages back.
I said I was bothered by the fact that your doctor did not give you the information you needed for you to make important decisions. In no way was I trying to make your doctor's omission of the truth your fault.
I agree with you that some people come here just to start a fight. I am not one of them.
I was not discussing "feelings of warm fuzzies." I was talking about respect. Someone cursed at me the other night in her post. What exactly can we gain from that?
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This "alternative" forum was created so we can come here, away from those who are "offended" by this discussion, and speak freely. We had the holistic forum but were driven from that one. The ones who are offended can choose to stay away. Digger, I am pointing you out. Your offensive posts are not welcome here. You do not come to add any insight whatsoever, just to add insult.
For you ladies looking for information...all you have to do is click around in this forum and you'll find it. There are other threads discussing diet, lifestyle, alternative treatments, etc.
I didn't realize this was NOT on the active topics....Anyone know why?
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I think Nancy's onc and mine must have been twins with heart and brain defects! Ugh.
I'm almost 10 years out and I still cringe at the memories. But, as I said in a post on one of the forums here... I sought counseling about a year ago through the same cancer center and was told that they are so overloaded just with the patients with trauma from the experience who are currently in treatment or not long past it that they will not offer counseling to those who are more than 2 years out. Which probably is in part why oncs like ours don't have to tell us what legally we are entitled to know before doing treatment.
A.A.
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impositive,
I don't know what the criteria is for that distinction either.
A.A.
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