Bioidentical hormones..is anyone taking after breast cancer?
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I think this is all very interesting stuff.
When looking at hormone imbalances, we cannot overlook what is going on in our environment that is contributing to that imbalance. What good is it to supplement BIH if we continue to expose ourselves--often unbeknowingly--to things that continue to create the imbalance? From the plastics to the hormones is our foods to the air we breathe. We just don't KNOW what is contributing to the imbalance, and we don't know how MUCH it is creating the imbalance, and we don't know WHY it affects people differently, and we don't know HOW to truly fix it with BIH. It's still, and never will be, a "one-size fits all" proposition, whether for standard cancer treatments or hormonal treatments.
That said, do we just ignore what's available and what's known? I think not. And for every person who insists on evidence based medicine, there is another who goes on instinct or "what feels right" or what fits their belief system.
The Metformin issue is interesting. We may find that insulin dominance is as big a part of the puzzle and hormonal imbalance. We can control our insulin levels (to a degree, assuming a healthy pancreas) by limiting carbs and exercising our butts off. (Not just a walk up the street with our dogs, but an all-out, get out of breath walk several days a week.)
As for the gluten thing...everyone's different. Genetics play a huge role in our weight. My best firend has true Celiac disease. Eats no gluten, careful about preservatives that may have gluten, AND is on BIH by choice. Exercises moderately. And she's got a tummy as she ages...
Nonetheless, it's our bodies and we should do as we please. As long as we don't hold someone else accountable when the shit hits the fan. (If it does hit the fan ever; for many of us, it never will again. How do we know, though.) That's where the docs are reluctant to give in to our "research"--which isn't really research, but just reading and filtering out what we don't like. There's a line they won't cross, nor should they. It's their license that will be lost, or their wallet that will be emptied, when they are sued for a bad decision years later. (If I was a doc and someone purposely neglected to tell me a key piece of their medical history to get a med they wanted, I'd fire them in a heart beat and make lengthy annotations in their medical record. That's just unconscionable, to me.)
Off my rambling soap box for now.
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Posted his letter as we were all posting. Scroll up...
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We do the best we can to eliminate carcinogens from our enviornment. Organic, Grass fed meats, wild caught fish, natural cleaning pdcts. Stop breathing. It is impossible.
Metformin is ment to decrease the amount of glucose in the body as not to feed the cancer, and limit the hormone production of an over worked pancreas.
A GF diet is for over all health not nessacarily weight loss. I'll take my big tummy anyday.
I don't think I would or could actually lie to a dr about my health issues.(unconscionabe) YOU ARE RIGHT. I'm sorry for making that comment. Very irresponsible. However I still will persue trying to balance my hormones, IF they need it. The AI's are not the answer.
My SIL has been very ill for a long time. Lymphoma, she had her lung removed 18 months ago, and celiac disease. Shes 83 y\o and a tough women. Loved to eat. 6 months ago she under went chemo and rads to her throat. Did it prolong her life?????????????It did destroy her QOL.. without a doubt. she can no longer eat, weighs only 90lbs. Who should be held responsible for that?
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Circles: Thanks so much for the post! Your efforts are much appreciated as we try to sort out what we should be doing to protect our bodies from this dreaded disease. My naturopath said as much to me, but your doctor was very brave and convinced enough to put it in letter form. I applaud his efforts. Wonder if he got a reply?
I am so tired of hearing the phrase "standard of care". Now, when a doctor says that to me, it means his hands are tied with regard to any outside the box thinking, regardless of what he might really feel. I was told by several doctor friends "off the record" to do my own research regarding treatment options because that is the only way I would be able to get anything beyond "standard of care" in the industry. As Ann above stated, the AMA governs conventional medicine and licenses can be lost if a doctor crosses the line of guidelines set down for treatment. They worked too hard for their licenses to jeopardize them.
Bottom line...you must be your own advocate when it comes to health choices, and Ann, you are so right again when you say we are alone accountable if and when the proverbial hits the fan! Even if we did everything the doctors told us to do, it would be the same, because we made that choice, so I'm damn sure going to make the choices that I feel are in my best interests.
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chef127,
Thank you for those very kind words. It is hard to understand why any bc patient who has had to learn their way through diagnosis and treatment is adverse to having enough compassion for providing the mere information about possible options to consider.
I want to point out the importance of the recent research results by Dr. Lisanti in regard to metformin, since my previous comment was pretty limited to the issue of weight maintenance with the use of it.
There are two parts to it:
1) His work indicates how metformin provides greater protection against cancer -- not just breast cancer but all cancers. There has been a lot of confusion about the role that the mitochondria play, and if his work holds up to challenges, it indicates that using metformin turns the activity of the mitochondria on to allow conversion of energy through the destruction of cancer cells. (? Does that include stem cells? I don't know.)
2) In the process of making his discovery, he found that a simple test that is already in common use (the Cox stain) may be able to be used at time of surgical removal of tumors to distinguish tumor tissue from surrounding nontumorous tissue better while still in surgery, so that there is more accurate removal of tumor tissue.
http://articles.philly.com/2011-12-05/news/30478022_1_cancer-cells-cell-cycle-mitochondria
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In terms of diet, I stumbled around like all the rest of us here with it, and in the process came across an individual who had no connection to cancer but who had the understanding of chemistry and a fascination with that very objective side of analyzing what works and what doesn't. What I got out of it was that, very roughly speaking (I am no chemist), it is important to balance one's intake of omega-3's and omega-6's, long and short chain. Now maybe you have enough of a chemistry background to go from there, but I am somewhat more limited. He also felt that vitamin D level is quite important.
Anyway -- Balancing the type of fats one eats is key in his opinion. I eat a minimal amount of animal fat (such as a bit of organic butter, for example) but I make sure I balance it with olive oil and the like.
I also stick as much as possible to organic foods. While I'm not thrilled with killing animals so that we can eat them, actually my somewhat limited understanding is that animal fat has a chemical attraction for toxic chemicals that plant foods do not. I don't know if that is the basis that some of those like Dr. Weil use or not.
A.A.
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Balance is the key with the omega's. The omega 6 fatty acids are more prevelent in our diets, because of the many sources. I do take flax oil and eat fatty fish for the omega 3 and eat avacado,olive oil,nuts and seed for the omega 6. NO MORE fried chicken or potato chips. My vit D is low. I need vacation in the sun. I also take 6,000-10,000 a day. Lack of vitamin D can attribute to BC and is thought to cause Multiple sclerosis. NO ONE KNOWS
A.A. ..........My words are never kind, but true.
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Even in the Sunshine State many have low Vit D. I think because humans no longer spend all that time outside as early man did that we just don't get enough Sun. Period.
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There is an interview dated 2005 with Bent Formby Ph.D and he briefly discusses the anti estrogen effects that progesterone is known to cause.
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Circles, I love the letter your integrative doctor wrote! It sounds like he not only has an excellent grasp on hormones, but he did a fantastic job explaining his position. I'm really impressed with his knowledge, passion, and willingness to share his point of view in an effort to educate your onc. Good for him, and good for you for finding him! Deanna0
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I had my meeting with my onc today and went over the progesterone research. At the bottom of
the discussion we finally got to the core of the issue. All of the research that I had was
"laboratory research" . ( I had called it clinical research.) Lab research is not good enough to alter the course of treatment He said that unless clinical trials are done with humans rather than little parts of tissue and cells or in animals there is no way to know or to prove that a progesterone
therapy would work as it does in the lab. A living human is more complex.OK I understood. Then I asked a couple of Million Dollar questions. Who pays for clinical trials?
Answer mostly Big Pharma. Why have there never been clinical trials based on all of this lab research by Big Pharma? Answer. Because progesterone is cheap and they can't make any money from it.I looked up megace clinical trials and they have been conducted. One I saw was conduced by a couple of pharmas and one by the N.Y. School of Medicine. Megace is a progesterone derivative used when Tamoxifin no longer works or in uterine hyperplasia.
Maybe there is some hope that one day somebody will fund the clinical trials on progesterone treatment of breast cancer as a first line treatment instead of chemo or hormone blockers.
He also said that if I chose to do something on my own, which I could, then I would be taking a big gamble since there is no way to know how much or how little would be necessary or whether or not it would cause more cancer. He said I could gamble if I wanted to but if I gambled and lost it would be my life. He said that if he told me to do progesterone therapy on my own and I died he would shoot himself for doing so.
So the bottom line is that until there are clinical trials with humans, the only therapies that doctors will give us to beat cancer are the ones that have been tested in clinical trials such as chemo and hormone blocking drugs.
I still don't have an answer as to rads. The rad onc, my onc and a group will be having their usual meetings to discuss various patients and they are going to bring up my stats and see what everyone thinks. My onc still said I probably won't have to do it. I must wait until after rads to take Armidex so I have been given another short reprieve. It looks like it will be Armidex regardless and I will have to see if I can do it.
Kathy
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Kathy: Thanks for sharing that information with us. You were lucky that you were able to have a meaningful conversation with your MO The one I went to dismissed everything I tried to bring to his attention that wasn't something he suggested. Needless to say I won't be using him, but just saying.
Since I know I'm not doing rads I need to see another MO about some anti hormone therapy. I guess I'll try it and see what happens, but will start with a lower dose than prescribed until my body adjusts.
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Sometimes I wonder if the only way to find out would be to find a proper researcher who also happens to have breast cancer, and then do whatever we have to, to take "the risks" and go do it ourselves.
As long as there is no one sitting on our tumor boards who is interested in endocrine therapies, we really have no one "there" at the time of our treatment decisions to bring the knowledge and authority to raise those kinds of questions.
A.A.
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A.A. In a way, there are some of us doing that right now when we refuse to take chemo or rads. I know that I am taking a slight risk in making this choice, but to me my QOL means more than the possibility that my bc could recurr in five or ten years.
I would be happy to participate in a trial if someone started one, but I couldn't even get into a clinical trial for external beam partial breast radiation because my prognosis was too good. They needed people that were higher risk. Right...but they still wanted me to take whole breast rads....no thanks! I had to sign a release saying I was opting out.
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Me too, Kaara. But I have wondered just exactly what, if anything, exists on record to say just how what I am doing is being "counted" in all the statistics about who did what. There is the cancer registry that the hospitals use nationally to track patient outcomes, but I still wonder what gets counted by it and what doesn't -- especially in regard to those who don't do standard therapy, aren't in the many chemo-containing clinical trials, and who see other types of treatment providers and not oncs.
I continue to participate in a national clinical trial for those with family members who have had ovarian cancer, It tracks me in terms of my CA-125 and my annual TVUS and my lack of recurrence of bc (and I've never had ovarian cancer), but I wonder if that info is merged at all with the outcomes for treatment.
The only sharing of knowledge about other possibilities seems to be word of mouth, like here.
A.A.
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I get the feeling that the research continues til they find the answer THEY want for THEIR drugs, and then settle on a conclusion in their best interest. I must be peranoid and untrusting.
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The news is out on the new cancer vaccine that is curently in trials. I tried but wasn't able to post the article on here. It is a series of injections that activate the killer T cells in our bodies to attack the cancer cells through boosting the immune system. Finally, it is being recognized that the immune system plays a role and is capable of killing off cancer in our bodies if it is given a fighting chance! It is said that it will work best on those who have not had too many treatments that compromise the immune system. Now we just have to hope and pray that it actually sees the light of day for the millions that are suffering from some type of cancer. In the meantime we keep doing what we're doing to stay healthy.
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Kaara,
Thanx for that info. Perhaps I can put my doubts to rest. I'm doing my happy dance( not very attractive, I do it in private only).
But 3-10 years ia a long time to wait for this.
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I wish we all could see the cure in our lifetimes. I am pleased to see research points to a healthy immune system to fight cancer. I have been on the fence about chemo myself. Though the Doctors all encourage it, my Integrative Doc wants Onco results to make the call. But I have just about decided to pass on chemo. I am also passing on any hormone blockers, passed on rads and the rest of the standard of care treatments. I know surgery isn't enough but I just don't want to be burned up with rads (already have thyroid issues) and I don't want or have time to be sick from chemo. I'm going to listen more to the Integrative Doc and will most likely get my hormones balanced. I always feel confident over my treatment decisions UNTIL I see the conventional Doctors and Onocologist. They scare the crap out of me with the "you can roll the dice if you want but your life is on the line" comments. Then I come home and try to reason with myself. After all, chemo, rads, bio identicals, ect, there are no guarentees either way. Sometimes we have to trust our gut feelings.
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Circles: Yes, I hear you. I just had a good friend tell me when I told her I wasn't doing rads..."so you are going to bet the farm on this...you are too young to do that!" In the meantime, she has CLL and has resisted treatment for almost 8 years, preferring to let her immune system handle it. Now I ask you...what is the difference? I don't challenge her on this because all I want her to do is try to be more health conscious and work to get her vitamin D levels higher. She has a compromised immune system, and the doctors have never even tested her vitamin D levels!
You are right...we have no guarantees either way, so we have to do what we feel is in our best interests. Our conventional doctors only have three things in their tool bags that they believe in and are able to recommend...chemo, rads, and hormonals. I don't hold that against them, but I am going to look into other options that seem more reasonable for my age and early stage cancer.
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circles,
Go with your gut. It's easier to live with, and you can always change your gut feeling. My onco said I was burying my head in the sand. Its a damned if you do and damned if you don't thing. I only did the rads because my gut said DO IT.
A friend of my sons from college ( Princeton U) started a comany manufacturing Hormone creams. I did consult with him several months ago. I asked all the wrong questions because I didn't know much about the hormonal effects on BC. I'm gonna get back to him and see if WE can find a low dose hormone cream to safely try, IF he is willing.
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chef127: Keep us posted!
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Hi Kaara, I see you are a Floridian. We are from Florida too but living now in TN. Interesting about your friend. Seems like a do as I say, not as I do. You do what you feel right for you. We have to be our own best advocates.
Chef, let me know what your friend says. I used bio identicals and they really did make my lump grow and burn BUT clearly the balance was all wrong for me. I think finding the right balance is key.
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One other thing I forgot to post. When I asked about hormoes circulating in the body the onc said that what matters is the percentages of hormones in the cells in the tumor. I asked him what mine were in the path report - ER 90% PR 80% What that meant was that my cancer cells were almost totally receptive to estrogen and progesterone. That makes it easier to treat with hormone blockers.
However, that still doesn't answer the question about balancing hormones that circulate. Unless and until clinical trials are done so that there is proof that balancing the circulating hormones will kill the cancer cells, the doctors will not prescribe it. And of course as Circles wrote the balance is the key. We have no way of knowing how much or how little will do the job becuase nobody has figured that one out.
Kathy
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Circles: We spend the winters in SE Florida and the summers in Western NC...south of Asheville. The mountains are beautiful and offer us a relief from the heat! My boyfriend has MS and he tolerates the summers in NC better than Fl. It's so much easier to eat organic because that part of the country has a lot of locally grown organic vegetables that are fresh and sold daily. I do a lot of my own gardening there that I don't do in Fl. I had a huge crop of organic tomatoes last year. This year I might try some other things like peppers and cucumbers.
TN is beautiful...I love the Gatlinburg area...we've been there several times, as it's just over the mountain from NC.
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Another study in 2008 titled "Estrogen Effective for Treatment-Resistant Mestastatic Breast Cancer"
This study claims estrogen, specifically estradiol was used prior to tamoxifen.
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Kaara, my Integrative Doc is in N. Carolina. Asheville Integrative Medicine. What a coincedence! Maybe I'll see you there one day.
To the rest of you, I love your imput. Keep it coming! Knowledge is POWER!
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Kaara, my Integrative Doc is in N. Carolina. Asheville Integrative Medicine. What a coincedence! Maybe I'll see you there one day.
To the rest of you, I love your imput. Keep it coming! Knowledge is POWER! LiowG, that really explains why my Integrative Doc wants to give me low dose estrogen! Thanks so much for the link!
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Circles: Small world! We will be up that way in early June. Let's keep in touch. Good to know there's Integrative medicine in that area. Is this the doctor that wrote the letter?
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Kaara, yes same Doctor. I will be going in March for 2 vitamin c IV infusions a week, for a total of 24 treatments. They have their own lab.
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