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  • makingway
    makingway Member Posts: 465
    edited September 2009
    Vitamin D Prevents Cancer: Is It True?
    You must watch this video if you are interested in your health and survival. I watched it. It is long, but I'm so glad I did. I will be ordering some vit D along with my other supplements.

    http://www.youtube.com/watch?v=TQ-qekFoi-o

  • deni63
    deni63 Member Posts: 372
    edited September 2009

    Vivre- I thought you especially would be interested in this excerpt. It is all about the benefits of coconut oil!

    http://books.google.com/books?id=_MVwKoDvcj4C&pg=PA142&dq=coconut+oil&lr=&client=firefox-a#v=onepage&q=coconut%20oil&f=false

    Deni

  • deni63
    deni63 Member Posts: 372
    edited September 2009

    Hi Deanna,

    Have you been getting enough exercise? That effects cholesterol levels....just a thought...

  • RunswithScissors
    RunswithScissors Member Posts: 69
    edited October 2009

    This is an excerpt from an article with Michael Pollan, author of "In Defense of Food". A link to the complete interview follows. His book is very good, much easier to read than this interview!

    " The big message from nutrition science and public health since the 1970s has been that the great dietary evil is fat -- saturated fat in particular. In the years since, this hypothesis has gradually melted away. There are still people who think that saturated fats are a problem because they do raise bad cholesterol, but they also raise good cholesterol. But there are very few people left who think that dietary cholesterol is a problem. There is a link between saturated fat and cholesterol in the blood. There is a link between cholesterol in the blood and heart disease. But the proof that saturated fat leads to heart disease in a causal way is very tenuous. In one review of the literature I read, only two studies suggested that, and a great many more failed to find that link. Yet the public is still operating on this basis that we shouldn't be eating cholesterol.

    In fact, when the government decided to tell people to stop eating fat or cut down on saturated fat, the science was very thin then. But the net result of that public health campaign was to essentially get people off of saturated fat or try to get them onto trans fats, and we've since learned that that was really bad advice because the link between trans fats and heart disease is the strongest link we have of any fat to heart disease. They told us butter is evil and margarine is good, and it turned out to be the opposite.

    You still see all these no cholesterol products and no saturated fat, and the American Heart Association is still bestowing its heart-healthy seal of approval to any products that get rid of fat no matter how many carbohydrates they contain. The science has moved on. The science now is much more curious about things like inflammation as a cause of heart disease and the fact that refined carbohydrates appear to increase inflammation and metabolic syndrome. These assaults on the insulin metabolism from refined carbohydrates are perhaps a culprit."

     http://www.michaelpollan.com/press.php?id=92

     I'm hearing the analogy a lot recently that  " You notice that every time you see a house on fire, the  firetrucks are there.  But blaming cholesterol for heart problems is much like blaming the  firetruck  for starting the fire."  

  • Calypso
    Calypso Member Posts: 132
    edited September 2009

    Thanks Shepherd for that excellent interview. I LOVE Michael Pollan's books.  I got "In Defense Of Food" on CD and listened to it twice in my car on my commutes one month.  But I liked his "Omnivore's Dillemma" even better. Don't you just love the way he sums up his philosophy:  "Eat Food, Not Too Much, Mostly Plants".  lol.  I want to stencil that on the wall in my kitchen!  

    Sometimes finding out what started the fire is the hardest part, I suppose.  Certainly the firetrucks had nothing to do with it.  The smoke is only the warning.  Somewhere, something was ignored, something got too hot, someone wasn't paying attention....  It sounds like I'm saying that it was my own fault that I got bc.  And I know on other forums others have blasted this notion as being unhelpful.  But my goal here is to start paying attention so as to NEVER get it again.  I suppose that's why I still come to these discussions, (even though sometimes I'd rather forget about bc altogether) to find out what I can to prevent recurrence, and also, as Vivre rightly points out, to share.  

  • anondenet
    anondenet Member Posts: 261
    edited September 2009

    I support the Weston A. Price Foundation's position on the importance of fats. Also, Michael Pollan. They have provided a lot of evidence against a plant-based diet.

    See "The Skinny on Fats."

    http://www.westonaprice.org/knowyourfats/skinny.html

  • vivre
    vivre Member Posts: 881
    edited September 2009

    Deanna -The great points that  Shepard stated, backs up what I have read too. Cholesterol is not  the criminal it has been proported to be. In fact having a high HDL(the happy cholesterol) is very beneficial. My last blood test showed my cholesterol was over 300, my highest ever,  too! I panicked at first, but my doctor (who thankfully knows the truth) told me not to worry because the total was up because my HDL was really high. Since I am taking fish oil and eating lots of good fats like avocados and coconut oil, it would be logical that this would now be higher. Also, our cholesterol goes up as our estrogen levels go down, another good sign. According to Dr. Ray Strand, whose books I really like for his common sense, cholesterol is just a number that has been used to measure something so that drug companies could push all these statins on us. They needed a way to convince doctors to prescibe these drugs, so they came up with a test to do so. He feels the numbers are not a significant predictor of heart disease, but a better indicator is the homosystine levels. So the fact that this number has gone done according to your testing is what is important. He also agrees that insulin levels are important. There too, mine have come way down since I cut out all the sugar, diary and gluten and my cortisol levels are really low, indicating that I am controlling stress, and also proof that all the belly fat I lost was worth it, not to mention the fact that I can fit into size 6 jeans with ease for the first time since I was 15. Also, I agree with you that I was very healthy before I got bc. Or so I thought. I have always been very active, never got sick, ate mostly foods I prepared myself. But one of the things I did was take a total look at everything in my life. I looked at my exposure to household and garden chemicals, my water supply, I seriously changed my diet, exercise daily instead of just a couple of times a week, and really got my emotions in check and my stress levels down. Cancer is caused when our body is subjected to all kinds of free radicals that overwork our immune system. Look at how many things we are TOLD cause cancer. Not one of them will by itself, but pile it all on, and viola, our system breaks down. The great thing about this thread is that we can learn from each other about all kinds of little things that will make a difference in our health. Add them all in, and add it all up. The more we tweak the system, the healthier we will be. The reason I know that I truly am healthier is that I feel so much better. When we are balanced, we have more vitality and are happier.

  • anondenet
    anondenet Member Posts: 261
    edited September 2009

    Deanna,

    You have a very knowlegeable doctor!

    There is no controversy about the actual cholesterol facts and how the theory that cholesterol is bad was developed. The only controversy lies in the doctors who have not read the facts. 

    Weston A. Price's sally Fallon has some wonderful CDs on the history of the "lipid hypothesis."

  • Unknown
    edited September 2009

    Hi redriver...I am almost finished reading the China Study - love the book.  I have been a vegetarian for years and definitely feel better for it.

  • dlb823
    dlb823 Member Posts: 2,701
    edited September 2009

    I really appreciate all the thoughts on cholesterol.  Shepard, I haven't come across the book you mentioned, but it sounds great!  I'll have to pick it up.  Meg, my HDL is 78, but my LDL was also very high.  My ratio was in the "normal" range.  And Deni, you are so right about the importance of exercise, which is why I've upped my early morning walks from 2.5 miles to 4.5 miles (1.5 hrs.).  It scares me to think where my lipid #s might be if I didn't walk that much!  What I can't figure out is why my #s are so different post chemo/rads/off HRT & on I3C + a lower fat diet + more exercise, and it worries me that maybe something isn't working properly.  In the past, I lived in Greece for about a year, during which time my cholesterol level dropped 50 pts. -- with no awareness on my part until I returned to the US and had a regular checkup.  So, if diet impacted it so quickly and significantly then, why have the intentional changes I've made in recent months sent it soaring twice that amount (almost 100 pts.) in the other direction?  It's just weird, and I hate not fully understanding what's going on.   

    About The China Study... I had the oddest encounter when I was going through chemo.  A lovely extended family I'd never seen before or since were out riding bikes.  All of a sudden, the older gentleman comes to our door and asks if his grandchildren who are visiting could play on our big, grassy yard.  Long story short, when he saw I was obviously going through chemo and learned it was for bc, he told me that he lectures on nutrition, told me to stop eating all animal products, and to read The China Study.  Without going into detail, strangers just don't knock on your door in our gated community, so I've always believed it was no random coincidence.  I know some people take issue with some of Colin Campbell's research, but I've always believed that God has been on my side throughout this experience, and the stranger who came to my door to tell me about The China Study was something beyond a coincidence.    Deanna

  • AllieM22
    AllieM22 Member Posts: 188
    edited September 2009

    wow--that's so odd Deanna! I can see why that would feel like a "sign"...

    I haven't read the China Study but I know someone quoted some odd things about it like a lot of veggies that weren't good for you--I forget--but it put me off reading it. I do know a lot of people on here have read it...

  • MBROWNING
    MBROWNING Member Posts: 34
    edited September 2009

    I, too, read the China Study.  The thing I was most impressed about was that T. Colin Campbell was raised on a dairy farm.  So, for him to go against what he knew from a very young age was compelling (and his views changed quite by coincidence..likely by shock..through his research).  I found the experiments his team did with rats and casein to be fascinating (they could turn cancer on and off by either injecting or restricting casein).  This book was enough to turn me off of dairy (I drank loads or organic milk...literally became addicted to Costo's 1% organic milk...about 1 1/2 years before my DX and I drank it in mass quantity).  I do not question anyone else's acceptance of dairy and I know there are margins of error in any study, but I did find the book to be very interesting. 

    Deanna~  I had a somewhat similar experience.  As the radiation/tamoxifen treatments were being pushed harder and harder, I really began to pray for a "sign" that the alternative path I had chosen was right for me.  The day of my dreaded oncology follow-up came and I hadn't received anything definite either way.  I left the doctor's office with a tamoxifen RX in hand and sorrow in my heart because this was just not the way I wanted to go, but I thought that this was my sign that, to my dismay, the conventional path was where I should be going.  On the way home, I stopped at Whole Foods to do some shopping and made a visit to  the salad bar while I was there since I hadn't eaten lunch.  As I was loading my plate, a man came up to me and in almost a whisper, said to me, "You must be very careful of what you eat".  "Excuse me", I said.  He said, "You are a good example of discipline; not everyone pays attention to what they eat and you obviously care about what you put in your body".  I said, "Thank you, I am trying really hard" and then kind of brushed him off.  My first thought (human nature, I guess) was to think he was some kind of weirdo hitting on me.  When I sat down to eat, I'm thinking about what just happened and it hit me, THIS was my sign.  Certainly, Whole Foods is full of healthier/more-fit looking people than me and I was not the only one filling my plate with veggies, so I thought it was more than coincidence (or a weak attempt at hitting on a younger lady) that this man said these words to me.  I had been working so hard for months at my new way of eating and for the word "discipline" to be spoken was just the confirmation I needed.  I jokingly relay this story to friends and say that Jesus visited me in Whole Foods.  I regret that I didn't pay more attention to this man; nonetheless, the very brief encounter ultimately meant the world to me.  My tamoxifen RX is still in my medical file, unfilled!  (BTW, I do not question anyone who has filled their tamoxifen RX; it just wasn't right for me).  Melissa

  • Merilee
    Merilee Member Posts: 734
    edited September 2009

    Did anyone else know that Naturopaths only hold a 4 year degree?  Look what I found:

    Naturopaths

    Naturopaths and Naturopathic Doctors (ND) are two groups of professionals that practice naturopathy in the United States.

    The major difference between the two groups lies in the area of formal education. An ND holds a bachelors degree, has completed pre-medical coursework, and has graduated from an accredited naturopathic medical college. A traditional naturopath may have little or no formal education.

    Traditional naturopaths and Naturopathic Doctors (ND) follow six key principles when treating patients. These principles define who they are and how they approach medicine and life in general.

    First do no harm. Originally a part of the Hippocratic Oath taken by all doctors, it seems that many health care professionals have abandoned or at least forgotten this important rule. It is difficult to say exactly how many people are injured or killed by medical malpractice or preventable medical errors each year, since published figures vary greatly, depending on the source. Estimates range from 83,000 to 784,000 deaths.

    By contrast, there are no known deaths attributed to treatment prescribed by modern naturopaths or naturopathic doctors. We do not prescribe drugs, because of the large number of known side effects, adverse reactions and even deaths caused by prescription drugs. For example, Vioxx (a pain reliever) caused the deaths of over 60,000 people before it was finally removed from the market. There are other less dangerous ways to treat pain.

    Nature heals. In its natural state, the body is balanced, healthy and strong. The systems of the body work together to combat disease, repair damaged cells and maintain overall health. When something disrupts the balance, illness may occur. Naturopaths attempt to return the body to that balanced state and, once health is restored, to maintain that balance for life. We have a number of treatment options at our disposal, all of which are safe, effective, natural and non-invasive.

    Naturopathic doctors do not perform major surgery or procedures that "invade" the body. Surgery, although sometimes needed in emergency situations, is largely unnatural and does not fit with the first principle of "do no harm," because often the risks are too great. For instance, infection at the site of the incision is common; secondary infections are common because hospitals are breeding grounds for Staph and other bacteria; allergic reactions to anesthesia are common and, as more people are finding out, hospital errors are extremely common.

    A recent study found that 1.24 million patient safety incidents occurred between the years of 2002 and 2004. In 25% of those incidents, the patient died.

    Treat the whole person. Many things affect a person's health. Naturopaths consider a person's lifestyle, job, social life, environment, family history and other relevant factors when prescribing a treatment plan. So, each plan is unique and tailored to the individual patient.

    There may be a physical cause for a condition or there may be another problem that causes unwanted physical symptoms. The cause could be mental or emotional. A condition could be related to past trauma, stress at work, family problems or any number of seemingly unrelated factors.

    Treat the cause. This may seem logical. You may even think that the mainstream medical community looks for a cause, but in most cases they are too busy treating or masking the symptoms. If you ask, "What causes this?" The answer is often, "We don't know." Naturopathic doctors find the cause of an illness or condition by first listening to the patient. One of the complaints that many people have with their current medical care is that doctors don't listen.

    Naturopaths listen. We evaluate all of the patient's symptoms, not just the acute symptoms. After evaluating the factors mentioned above and identifying problem areas. Then, we treat the cause by prescribing a plan that addresses those areas. Prevention is the best cure. Many major health organizations now promote this principle. If you practice a health lifestyle, you can prevent illness.

    The physician is a teacher. Naturopathic doctors recognize their roles as teachers. Despite all of the health information that is available today, most people do not know how to live well. That's understandable, because much of the published health advice is conflicting. Advice about diet or exercise is only relevant if the individual is considered. Nothing works for everyone. Naturopaths make individual recommendations and teach people how to take responsibility for their individual health and well-being in order to live longer, happier, healthier lives.

  • RunswithScissors
    RunswithScissors Member Posts: 69
    edited October 2009

    One thing that bothers me alot  is that science has again again hit the wall  trying to find  a mystical "one-size-fits-all" ideal diet - and I've become convinced that therein lies the problem. That's why even though I have heard a lot  about The China Study,  I haven't read it.

    When I started to raise livestock, I was very surprised to find out how much one breed of  sheep can vary from another.   I learned that the breed  from Scandinavia had entirely different nutritional requirements than  the ones that evolved as nearby as the British Isles. The dietary differences are so distinct, that some minerals required by one breed would literally kill the other.  I was shocked at how significant heredity and adapation were in their dietary requirements.   Each time we acquired a new species of animal on the farm, I saw this fact repeated over and over, chickens, goats, cows... all have varying  food needs among the breeds. 

    IMO, it's not only  plausible, but very likely that the human body  has also adapted to locally available foods. (albeit in a much longer time frame). If my unique biological makeup is more likely to thrive on the diet of my eastern european ancestors, would it be wise to emulate what is best in China?  The people whose genetics I inherited could never have been strictly vegetarian, much less vegan - the climate, the seasons, the inability to store food long term  would not support such a thing.

    I  also think the issues with dairy are extremely important and warrant further study, but I  can't understand condemning an entire food group based on this study - (didn't we learn this lesson already? Eggs come to mind! ) there are too many unknowns about the casein that was tested.   Like what species did the milk come from? (Cows milk is very different from goats milk. There is even a big variation in the make up of the milk from a holstein cow versus a jersey cow. )  Was the milk tested pasteurized or raw? Was it homogenized? Were the animals grain fed, factory raised, fed hormones and medications?  How about pesticides? Was the casien A1 or A2? To the best of my knowledge, the China Study was not clear about those very significant details of the milk it tested, yet it declares all dairy is carcinogenic.   

    Likey there ARE many  populations that are better off with no dairy in the diet. But everyone?  I think we could learn alot by looking  at the distribution of lactose intolerance, which would tell us more about which humans have adapted to dairy, and which have not. 

    I don't want to sound like I'm just  bashing one side of this issue. Sally Fallon of the Weston Price Foundation used to be my "dietary hero" until I read her book, "Eat Fat, Lose Fat."   In it she is guilty of the very same one-diet-for-all thinking. She promoted coconut and coconut oil (which I agree is outstanding food), for all people as a dietary STAPLE;   as if it could grow anywhere on the planet and we all evolved require it. She hailed  coconut-for-all in the same way that Campbell touted no-dairy-for-all.

    Over the years, I've watched as science announced one recommendation after another when it came to food. And they've been contradictory and wrong over and over again.   So please don't mind me ---  I've become pretty cynical these days!   

    Thanks to the practices of factory farms and food producers, our meat and dairy products are completely unlike they were 100 years ago. I'm sure the quality of the food counts for more than we've wanted to believe. Luckily, we're learning from our mistakes and demanding better. 

    Anyway, I think that we all have an innate sense of what is good for our bodies and what isn't. (Not counting the "addictive" items like sugar and white flour, that is! )    If  meat makes you feel like a 10 ton brick, your body may be telling you not to  eat it.  If dairy (or broccoli)  gives you indigestion, ditto.    One of my favorite things about Michael Pollan is that he believes that  stressing over details about how to eat is probably more damaging than making the occasional mistake.   It's nice to have made peace with food - the real stuff -  not a bunch nutrients in a test tube! Smile

  • vivre
    vivre Member Posts: 881
    edited September 2009

    Shepard- I love the way you think! You think critically, and do not take everything as gospel. That is exactly what we all need to do. You are so right that we all need to look at each or our systems to know what is best. I am really excited that you will be able to give us the organic farmer perspective. It will be a lot of help!

    I do however believe that cutting out dairy was the best thing I did for my health. I never thought I had any problems with it, but when I read Dr. Jane Plante's book, "Your life in your hands" about the link to dairy and bc, I decided to get rid of most of it. I still eat a little cheese and eggs as long as they are organic and totally hormone, antibiotic free. It is expensive,but that keeps me from using too much. This summer I ate some ice cream and I had terrible stomach cramps. This was proof to me that dairy is not good for my system. I eat a little meat, but a very little, again organic only. I just cannot be compulsive about it all.

  • MBROWNING
    MBROWNING Member Posts: 34
    edited September 2009

    I love your balanced approach, Shepherd.  I am certain that most (if not all) studies are flawed in some way(s) and the results are presented in such a way to be unfairly lop-sided.  I know that I personally have pointed myself in such a direction that I am so sure is right and I find that it is easy to believe things that support my path, but am often too quick to reject things that don't.  Your post was a nice reminder of the importance of balance. 

  • deni63
    deni63 Member Posts: 372
    edited September 2009

    Melissa,

    I had a similar experience when my onc handed me a script for tamox (even though I am ER-). It didn't feel right and I was convinced I wasn't going to fill the script unless I found a reasonable argument to why it would benefit me. I found no such argument. While I was in the middle of my quest, I reached a chapter in the book I am reading by Dr. John Lee about the use of tamox. After I read the chapter, I was more than convinced that I had made the right decision not to fill the prescription. I guess that was my sign. Do you think Jesus appears in paperback (LOL)!

    I believe we all get "signs" in one form or another on a daily basis. Probably multiple times per day. But, we probably don't even recognize it most of the time.

    Feel comfortable with your decision. And, if you haven't already, you should read John Lee's book about Breast Cancer (specifically when he talks about tamox). If nothing else convinces you not to fill that script, that will! Another good book I just started is Anticancer-A New Way of LIfe by David Servan-Schreiber, MD, PhD. In it he talks about his own diagnosis with brain cancer and how he turns to nutrition and lifestyle to improve his chances of survival. At this point, it has been about 17 years (or around there) since he was diagnosed.

    Take care,

    Deni

  • PS73
    PS73 Member Posts: 171
    edited September 2009

    Interesting stuff lady janes.  looking forward to eating watermelon w/o anything else.

    -  Im on my way to the radiation oncologist to get their insight into not getting rads w/ a lumpectomy and chemo.  Wish me luck.  I mean, as far as I know (which isn't a whole lot), they are so specific with the targeting to where the rads go, yet they dont cover the whole breast. Unless there are roots that spread from the very pinpoint of the tumor (which is gone now), what are the chances of getting it in another spot which has not been irradiated?  This is my question I will pose in mock 45 minutes.  So the reoccurance may be 40% of NOT getting it in that EXACT same spot?  - right or wrong?  scorned?  perhaps.  I shall dig and leven information to mass sisters bc lung cancer/thyroid cancer and leukemia aint worth it if the above is the case.  I could be very very wrong so forgive if I insult any intellects here.

  • Calypso
    Calypso Member Posts: 132
    edited September 2009

    Seems like an excellent question to pose, PS.  If I could have a do-over, I would for sure skip rads. Other things that I do are far more effective, I believe.  I am challenged to walk more now since reading DLB823' s post.  Aside from the numbers, DLB, how do you feel? If I were doing what you are I would feel real good.

  • anondenet
    anondenet Member Posts: 261
    edited September 2009

    The 40% figure for reducing recurrence is a completely misleading "relative risk" figure. The absolute risk reduction is less than 10% for local recurrence (I'm approximating).

    The survival advantage of doing radiation is nil. Zero. In fact, you may die sooner because radiation damages the cardiovascular area whether you are radiated on left or right side.

    You can scroll back in this thread or someone can point you to the actual discussion and evidence.

    >

  • rgiuff
    rgiuff Member Posts: 339
    edited September 2009

    PS73, I'd be curious to hear the results of your visit.  I already had Rads a year ago.  Wish I had found this website before then, maybe I'd have decided differently, don't know for sure.  Luckily, I had absolutely no problem at all with the Rads, no SE or problems after, never got burned.  However, I don't know if I've put myself at future risk for heart or other problems.  I was assured that this wouldn't be the case, so I just trusted the doctors at the time.

  • Springtime
    Springtime Member Posts: 3,372
    edited September 2009

    Vivre, I just ordered Jane Plante's "Your life in your hands".... 

  • PS73
    PS73 Member Posts: 171
    edited September 2009

    Hi ladies.  Ok, it wasn't the chernobyl disaster I thought it would be.  My main concerns were 1.radiation exposure to organs.  2. local radiation for a specific spot which would only help if a mutation occured in the exact same spot.  Concern 3 - scattering of radiation, what is the margin of error and how far does the radiation go.

    Exposure to organs.  They use feathered blocks to prevent organ damage including heart and lungs. They go in sideways and shoot preventative beams down to protect organs from damage and to control radiation.  There is a small area of the lung where the breast dips down that can be exposed - per radiologist, out of 10000 cases there may be 100 cases of women who smoke who can get lung cancer (not sure I believe this part and I don't have the notes in front of me so I may be saying it wrong but I know I will need to do more research).  2. Why radiate if only in the one specific spot.  Per radiation onc - the entire breast gets irradiated (for my specific case) and then the last three weeks they narrow in on the original tumor site.  side bar:  I was wrong, knew I didn't know much. Reoccurance apparently is dominant in the same breast as well as the original site of mutation.  Reason being that the chemo may have not gotten rid of all of the mutated genes from the original strain.  Bad fact point one - the radiation only kills the original mutation cells and not any future different mutations so the chance of having a local reoccurance with a different mutation is possible - anywhere.  The margin of error is between 1-2cm.

    Still unsure but now I have some facts from that side of the spectrum.  Would love input.  anomet - yes, totaly wrong with that figure. The reoccurace rate of the same strain in the same breast w/o rads is in the 20s -percent wise.  

    Net Net - no matter which way I go, I know the lesson is to take good care of myself to not get another strain - or try to do the best I can.  I intend to live a different life now, focusing on eating right, having a healthy mind and body and overall balancing my life to what it needs to be. 

    "The great adventures which our opponents offer is a voyage into the past. Progress is our heritage, not theirs." - Ted Kennedy
    Diagnosis: 4/24/2009, 2cm, Stage IIa, Grade 3, 0/1 nodes, ER+/PR-, HER2+

  • PS73
    PS73 Member Posts: 171
    edited September 2009

    Does anybody know of any clinical trials coming up with the DIM?  Id like to get on it if so.

  • fairy49
    fairy49 Member Posts: 536
    edited September 2009

    PS73, if only someone would, unfortunately don't see any clinical trials anytime soon for DIM.....when I win the lottery.........

  • anondenet
    anondenet Member Posts: 261
    edited September 2009

    PS73 writes: The reoccurace rate of the same strain in the same breast w/o rads is in the 20s -percent wise.  

    PS73, would you please get the actual study that shows this 20s thing and post it? This figure is still too high. It must be a "relative risk" statistic. These stats have not changed in 25 years. If I'm wrong, I'd like to see it -- the actual written body of information your radiation oncologist is working from.

    Thanks  :)

  • vivre
    vivre Member Posts: 881
    edited September 2009

    PS-I soooo agree with Rose. I wish I had never done rads. Like her, I had no burning, but I was freaked out the whole time. Plus I really think it zapped my thyroid. My field was right near it. Since rads, I no longer sweat.  I use to sweat so much, it would literally drip off my face when I exercised. Now, I get nothing. This really bothers me. I also had a really hard knot where the tumor was from the "boost", the concentrated frying they do the last few days. Thankfully, the iodine has really softened it! I know a lot of tumors tend to come back around the site of the old one. HMMMM could it be all the radiation!!!!! But I am so relieved that the iodine seems to be helping heal my breast tissue at last. Can't wait to see my next therm. There were still hot spots from the rads at my last one, year and half past rads! That stuff stays in the body a long time.

  • PS73
    PS73 Member Posts: 171
    edited September 2009

    Hi ladies, YES of course I will contact her and post her resources.  That is scary.  I mentioned the thyroid since I have an englarged lymphnode on it.  She told me the rads were so far away from it but I was still concerned and asked for a lead blanket to go over my neck if so.  I am very interested in the iodine.  I contacted the site mentioned in a previous post but they told me to see an endocrinologist and so far, Im searching for someone who takes my insurance.  They would not give me the loading test and I even offered to pay for it.  Weird. Back to rads - Sweating is natural.  The RO had no idea about iodine as her competition. She said if that most women have fibrocystic breast disease and do not get BC from it.  I countered with 1 in 8 women have BC.  I offered to send her articles and she is open to reading them.  She is young and was very interested in what I was saying about naturopathic medicine.  I even jumped on the tam and tossed in there the DIM therapy and how the Dr who created the 13C openly suggested working with DIM instead since it is better ...and how these Drs want to cure ppl and not just sell out their meds to make profit and how there is a large industry wanting to help ppl on a very personalized level.  We discussed how traditional medicine needs to go this route. 

    Lastly and then Illl get off my stool. I snuck onto the adjuvantonline site as a dr.  Not so great.  THere are no questions about if you had rads or if you are brca, yet they give you a relapse or mortality number.  Not very thorough if you ask me.  I also pose a question out there.  I was on my high horse yesterday too about how meds are so black and white and ppl are so specific with their BC.  If one is a % ER positive, how can the numbers be so blatant regarding percentages (in terms of hormone therapy).  If the world was black and white and all was linear, say you are 10% ER positive and the tam gave you a 10% boost for mortality, would that only give that person 1% overall survival from taking five years of hell hormones?  Ok I digress.  I will contact her for her resources, she told me to contact her with any questions.  Ill send her a note on monday so if anybody has any questions out there about RADS, send them my way :)

  • MBROWNING
    MBROWNING Member Posts: 34
    edited September 2009

    Deni~ You're right about us missing "signs".   Actually, when I was first diagnosed and asked, "Why" (I was never bitter, never asked "Why Me", I simply needed to know "Why"), it quickly became evident to me.  I had been praying for something specific about 18-24 months prior to dx.  I'm sure God gave me ample opportunity to receive what I had prayed for, but I failed to recognize any of those opportunities.  Finally, he had to resort to desperate measures and present me with something that I couldn't ignore.  Well, the BC dx opened my eyes right up!  Since then, I've learned so much (about BC, about nutrition, etc), but more importantly I've learned so much about myself.  I heard this on the radio today, "When you aren't getting an answer to your prayer, look at what's right in front of you".  I loved this.  Sometimes we try to make things so hard that we fail to see things that are right in front of our faces!

    PS73~ I had sooo many of these same questions at my radiation consults.  I just couldn't get why so much focus was being placed on preventing local recurrence.  My own thought was, since we're going to be paying so much attention to this area for the next few years, I'd kind of rather it land right back here if it's going to come back and we'd certainly catch it quickly!  My focus is more on preventing it from landing somewhere else and certainly preventing mets.  So, if I were to consider conventional treatments, whole body (tamox, etc.) seemed more do'able for me.  Ahh, if it were that simple.  The way they explained it to me was this:  If this thing recurs locally, it will be in a nasty form and is much more likey to spread and to spread quickly.  Ugh! Not the answer I wanted, but still not convincing enough at this point for me to board the radiation or tamoxifen trains.  IF (and this is a big IF) I were to consider radiation, there's a newer method out called the prone position.  You lie face down on a solid table and the breast hangs down through a hole in the table (sounds pretty, huh?).  This is supposed to provide the ultimate protection of surrounding areas.  It's not done in many places yet.....not anywhere in my state.

    I had a good visit with my PCP today.  She actually said she thought I was smart to consider alternatives.  I wanted to cry!  I told her, "Thank you for saying that because up to this point, all I've gotten from other doctors is pitiful looks when I tell them I'm taking an alternative route".  She even had me call the naturopath that I'll be seeing in November to make sure we ordered all the right tests!  How cool is that! 

  • vivre
    vivre Member Posts: 881
    edited September 2009

    MBrowning-Isn't it amazing how are prayers are answered, sometimes when we do not even realize what we are praying for? All I can say is Amen sister!