natural girls
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Yaz, I think I read Moss' report on Herceptin a while ago but I don't remember the evidence he reviewed.
Was he saying it helps recurrence but there's no survival value? What's the deal with increased brain mets on Herceptin?
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Hi Ladies,
Anyone out there on tamoxifen and still have uterus and ovaries?? I'm trying to understand why the doctor would put me on a medication that can cause uterine cancer and not order a hysterectomy? Why wait for the cancer to come and spread? I don't get it.
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Mollyann, you asked: "Was he [Dr. Moss] saying it helps recurrence but there's no survival value?"
Let me "dig it up" before I responded anything. If at all possible, I will post that part of his answer (if I find it in my .pdf document).
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Laurie, I have a uterus and ovaries. I take Tamoxifen. My onc and my gyn told me not to get rid of body parts I don't need to get rid of. I don't get it either. No one wants to do hormone level tests for me. My docs think my hair loss is inconsequential. It's like I had my chemo and now I should just go away. Never mind any lingering effects. I do take DIM to help reduce my chance of getting uterine or endometrial cancer. I'm so on the fence about quitting the Tamox. and just take the DIM. UGH I'm spineless.
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LaurieRR,
I am in the same situation as you are, and have the same questions. My OBGYN is willing to perform an oopherectomy, but she says often insurance refuses because there isn't enough evidence that it is necessary. I will be curious to read anyone else's response to your question.
Julie
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Has anyone had issues with low blood protein levels? Also has anyone read the information that says low Cholesterol is actually a bad thing and can make you more succeptable to diseases like cancer?
Julie
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I am on Tamox and thought I would have my ovaries out. then I read about how the ovaries are an essential part of our endocrine system eeking out just the right amount of stuff throughout our lives. One statistic that really got me. Women without ovaries have issues, but one was if you are below 45 and have ovaries out you have a decreased life expectancy. They don't know why. But something is happening. Anyway. I decided to keep mine for now....
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Firni and the rest of you gals just finishing treatments-You have to look and look until you find a doctor who will now help you get healthy. If you oncs or ob's are not taking you seriously, look for a new doctor. It took me a while but I finally find a couple of great doctors who think outside the box. They helped me with nutrition, blood tests for vit d and thyroid, hormone tests, etc. My regular doctors were only going to monitor me in case I got cancer. Who needs that? I wanted someone to help me be proactive. I am sure there are great doctors in your area, you just have to look. Do not feel you have to be loyal to a doctor who is not helping you. I really like my PCP, but she was useless. Now I look back on all the tests she sent me for when I was having chest pain and I am wondering if all those scans and xrays led to my cancer. I told her I think the pain was some kind of inflammation from inhaling a chemical, and when I found a chinese doctor, he agreed and treated my condritis successful. I have not been back to her since. I found that chiropractic doctors and naturapaths are more knowlegable about promoting health and prevention that regular MD's. It is such peace of mind to know I now have doctors who are in my corner. Check with a compounding pharmacist near you and ask if they know any doctors who understand hormone balance. It is important that we get our hormones in balance, and it is really hard to do this alone.
Susan-I am so happy that you are doing all that research. I know it is really mindblowing right now, and so hard to think when you have these decisions, but making an educated decision will ensure that you do not second guess yourself the way I have. Had I done my homework, I would have passed on rads. I just wish I had been as smart about it all as you are.
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The last RadOnc I met with, I call her "The Closer", told me that:
1. There are no SE's of Rads other than my skin getting clammy. No different than if you get a bit of sweat under your breast after exercising.
2. Rads have only proven to be effective if administered within 6 months of having surgery. I was already 5 months post-op.
3. Once you've had Rads you cannot have them again in the same breast even if you don't complete the treatment plan. Your breasts will "remember" the intial treatment and will not respond to further treatment.
She also told me that if I have a recurrence they can just do another Lump if it is caught early but when I agreed this was a better plan she changed her mind and told me that they probably wouldn't recommmend another Lump if I didn't do Rads. Sounded like blackmail. I decided to pass on Rads.
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Carole, That RADs ONC was only talking about the SE's of rads while actually in treatment, which was a lot more than just "sweating" under your breast anyway. That was not a fair representation of the truth. PLUS she is not saying what the effect of RADs are AFTER. There are MANY effects. They should not downplay the truth. That makes me very very mad! Irradiating your body is not a minor thing. I am now dealing with edema on one side of my back and under my arm pit. I am 8 weeks out from my last surgery, and I think b/c my armpit and clavacle were fried by rads, my body is having trouble dealing with the fluid in the tissues! on that side I saw LE therapists Friday and am all taped up and need to go 3x a week for 3 weeks to try and deal with this.
UGH.
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Daisy6, you might check out JuicePlus. It's highly concentrated fruits and vegetables in a drink. I haven't checked into it very thoroughly but the website is juiceplus.com Plus they have a 24 hour listen and learn at 1-800-942-1260.
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daisy-the amount of soy your nutritionist is recommending is a bit troubling. It was all the rage to recommend soy about a decade ago, but now there are people on both sides of the controversy. No where have I read anyone recommending that much in a day. And does she differentiate what type of soy? I can't remember which is the good kind and which isn't. I think Deni is more up on this. I do not like soy so I have not payed much attention to it. I do know that soy milk is bad. I have also been wary of soy since I have learned that it is the most GMO crop we grow and that most soy is GMO. Plus it is usually full of pesticides. I am wondering that the problems that soy has been associated with in more recent studies stems from the fact that the soy we get is toxic because of the way it is grown. Do you know that they actually treat the seeds with pesticides so that bugs will die if they eat it. Imagine what that means to US. There is the same problem with corn fed to livestock. And Monsanto has such a seed monopoly that they get away with this. Oh, and the former CEO of Monsanto is now the head of the FDA. Talk about the Fox guarding the hen house!
Spring, have you been taking the NAC to get rid of the radiation?
Julie-please hear what others have to say about QOL after ooph. It is so much better to work on hormone balance rather than blocking them all. We need some hormones or we age prematurely. And DIM will do the same thing as tamox, without worring about any side effects. Somewhere around here or on the DIM threads we have posted the studies. See if you can find that thread. Also, I read about the low cholesterol connection too. I use to have low cholesterol. Now that I am eating healthy, have lost weight and exercise daily, my cholesterol went up 50 pts. So I ignore that number now. I know I am healthier than I ever was before so I take that number with a grain of salt.
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Maybe this is something I should know, but what is NAC?
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Cutting out body parts is not always the answer. Dr. Patrick Quillin has a very helpful book called Beating Cancer With Nutrition. Lugol's iodine, (5%) also blocks the bad estrogen effect in the breast and has been attributed by several physicians to help in the fight against bc. They have found that when rats have enough iodine in them, and they inject the rats with carcinogens... they can NOT grow a tumor!
Do your research and trust that the right information will come to you.
Also, I take a multivitamin with many anti cancer supplements in it. I get it through a web site called vitacost which a nurse friend told me about. You can take a quiz at their site and input your health concerns and they make recommendations of various supplements, and what the ingredients are, what they are thought to help and also have feedback from customers.
Good Luck, but please don't jump into an unnecessary surgery.
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luna: we have learned about NAC from Vivre. I am now using it. You can search for the description/explanations that were already given on this site (I'll try to search, too).
EDITED TO ADD: Here we go....
Lili46 wrote:
Merilee...NAC is N-acetyl cysteine. It is a non-essential amino acid. It helps maintain/build glutathione levels in the body. It is an important antioxidant and protects the liver from the adverse effects of toxic chemicals.
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Daisy6-A very good source of protein is Quinoa which looks and "acts" like a grain. Most good groceries stores carry it and of course any good Health Food store will as well. In addition, beans and legumes are also good protein sources.
Spring - I agree with you re the Rads Onc. Rads do increase your chances of developing lymphedema. Granted not everyone who has had lymph nodes removed and has had rad treatment will develop lymphedema however, the risk is greater. I have mild lymphedema in my right arm - bummer. However, recently saw a FAB specialist.
Cancer - the gift that keeps on giving
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Vivre, I am taking something my osteopath recommended called "Detox Complete" which includes a different "cysteine than NA, but she said would do the "same thing". she didn't think I needed "additional cysteines". so hopefully this is doing a RADs detox ( and anesthesia detox). But, I think my lymph system was damaged from RADs. They fried my armpit and my clavacle, and I didn't have any positive nodes. I know they were doing what they thought was right, but at this point, it just makes me crazy to think back on it. UGH.
Purple, I have lymphedema under my armpit (on side of rib cage) and on my back on the one side. I know it is due to all the mx and then all the recon surgery. The LE specialist has me wearing my LE sleeve during the day, even though it is not really yet in my arm. she said that squeezing the fluid out of the arm may sort of "activate" the lymp system and kick it into higher gear to take care of the puffiness. She also has me taped up from back to front on that one side! And I have to go 3x a week for 3 weeks at least for lymph massage or whatever it is they will do.
YES, the friggin gift that keeps on giving!!! It's the cancer treatments!!! I would really like to see, in my lifetime, cancer treatments that are more targeted to the cancer itself, and gentle and sparing to healthy tissue. What we are doing now is just so disgusting.... blech.
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Daisy, are you talking about edamame? I have eaten these in sushi bars and also purchased them frozen in their pods from the health food store. I just love them, although I rarely eat soy anymore because I am er+. I would just put a bunch of the pods in boiling water for 5 minutes, drain, sprinkle with salt and then eat them with an ice cold beer! You don't eat the pods, you just kind of drag the soybeans out with your front teeth and discard the pods. They also sell them out of the pods already (frozen) and you could just add to anything you are cooking. I think they are good for you....lots of protein, super low-cal. To be honest, I am not sure I have ever tried to find out where mine were grown, though...? I think there are plenty of soybeans being grown here in the US. Unless those farmers are all growing corn for monsanto now...
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Hello Ladies!
Just an incredible week. Seeing my new MD who is treating me holisically and am feeling amazing on just two weeks.Sleep is being restored by amino acids and balancing my adrenal dysfunctions. Detoxing big time and cleaning my leaky gut issues and also testing the extent of my joint pain and what will do next there. My results are tomm for that. ALL this time..8 mos of misery thinking it was all benign symptoms goin on from post chemo and now realize this was all current before my diagnosis to BC and probably contributed to my immune system and stress to my endocrine system~!
My second not so great news, is a call from my BRCA gene Counselor i met wth prior to my diagnosis. At that time, my BRCA 1 was considered a benign, non deliterous (sp) situation and now after further successful testing, this kind of result is now considered a mutation and treating it as such. My ebb and flow right now is finally being restored and have no desire at this time to screw around with another body part out. Just do not want to go back there again as i finally am getting my oneness back. Never had issues down there and there is also no type of ovarian cancer on my maternal or paternal side. Not that it really matters if i already had BC. WHAT are the side effects of the ovaries and fallipian tubes out? ALSO isn't this gene also associated with colon, pancreas and cervix?
Just a drop by as this thread is full of so many amaazing and informative women!!!!
Healthy Wishes,'
Donna
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Vivre,
Thanks for the direction I will start digging around for information. You all are so helpful, every day I read this thread I learn something else I didn't even know was a concern! Thank You!
Carol
I just found the book you mentioned on Amazon for 5.95, so I am going to add it to my collection!
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I think there are plenty of soybeans being grown here in the US. Unless those farmers are all growing corn for monsanto now..
Be careful, because those soy farmers are probably growing Monsanto GM soy.......
"nearly 90% of the soy grown in the U.S. is genetically modified and heavily sprayed with pesticides, and you have to wonder if you should be eating it."
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Be careful, because those soy farmers are probably growing Monsanto GM soy.......
"nearly 90% of the soy grown in the U.S. is genetically modified and heavily sprayed with pesticides, and you have to wonder if you should be eating it."
Awwww, man....
The edamame I have used from Seapoint Farms claims that they don't use any GMOs. They are in CA. They state on their website that they import their product, but they don't say from where.
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Yazmin...Thank you for the clarification!
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I found organic tamari and edamame at Whole Foods. I eat it sparingly.
up date on the sprouting operation, It is not going so well without soaking the seeds in the 1 part bleach to 9 parts water. If you don't soak them the hulls start to rot in the tray after about 4 days. I have not gotten any to grow as tall as the ones at Whole Foods using any method. It does seem to produce enough for 2 batches of veggie sushi a week.
Have a Great Day Guys!
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Donna Dio, if you are BRCA 1 positive, most doctors would advise you to have ovaries removed because the detection for this type of cancer doesn't always show anything until it's at an advanced stage.
Having ovaries removed will cause instant surgical menopause, with a drastic drop in your estrogen, progesterone, and testosterone levels. If you are already peri or post menopausal, then it probably wouldn't be as bad as if you were premenopausal. Most women who have them removed for non Breast Cancer related reasons, are usually put right onto hormonal replacement, but being a BC survivor, conventional doctors would never prescribe this for us.
If I were in your shoes, I don't know what I'd do. I would hate the idea of losing my ovaries, because apparently, they are beneficial to us even after menopause. Being that the large majority of ovarian cancer cases occur in older women, I'd probably wait until after I'd completed menopause to think about having them removed. Until then, I'd just keep with frequent surveillance. I haven't been tested for that gene because of lack of family history of any of these types of cancers. What made you get the testing done?
You have to talk with the genetic counselor about exactly how ominous this result is and what the odds are of you developing ovarian cancer and then decide for yourself.
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Has anybody tried the active ingredient in green tea? EGCG?
Green tea by itself gives me caffeine jitters.
http://www.sciencedaily.com/releases/2008/04/080407114633.htm
Green Tea Ingredient, EGCG, Significantly Inhibits Breast Cancer Growth In Female Mice
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Hi ladies. The funeral and all is finally over. Thanks again for your support. My dd is taking it hard.
I will be seeing my pcp wed because I have been having some pain in my shoulder area. She will probably want some kind of scan done. So, my question is: Out of all the scans (pet, ct or mri) which is the best one?
Thanks, Patty
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mathteacher -
I am very sensitive to caffeine and I take two different forms of the Life Extension Green Tea Extract. Because you need some caffeine to get the benefit - I take one LIghtly caffeinated capsule and one Decaffeinated capsule - three times a day. I have no way of knowing your sensitivity - but I haven't had any problems at those doses. I chose LEF, because they had a pretty high percentage of EGCG over some of the other green tea supplements.
Beth
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Does anyone have a suggestion of what type of protein powder is best? I recently used a small packkage of Natural Sport Whey Good Chocolate. It tastes good and the ingredients look okay to me but I am no expert so thought I would defer to those of you who are.
I'm trying to figure out the best way to get protein and love anything with a chocolate taste.
Thanks for any help.
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