natural girls
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To make your voice heard on any issue, call you Congressman's or Senator's office. You will talk to a staffer who should be very polite and willing to listen. They will take notes on your conversation and pass the information along.
You can also email you Congressman or Senator. I recommend composing you comments in Word and doing a cut and paste into the contact form of the elected official. If you are a constituent of the C/S you will get a form answer via email. Just because you get a form letter back does not mean that they will ignore your email.
If you want lots of attention from you political party and you can afford it, donate $250.00. For some reason this is a threshold amount that will put you on all sorts of phone surveys. You want to cooperate with those surveys taking as much time as you need to get your point across. You will also start getting emails that ask your opinion on issues. Answer every one you are interested in. You may also be called by phone surveyors of the opposite party and you can give them input. I love those.
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Hi Makingway:
I'm done with my chemo, but I was on CMF so I did not lose my hair. But I have heard about the Penguin Cold Caps. They are used in Europe quite extensively and they do make a difference with hair loss. Why they are not offered here is beyond my understanding.--- if you can help patients with one of the more upsetting side effects, why wouldn't you do it. Thaks for bringing it up.
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Ladies - Haven't been around in ages, I hope all here are well. One quick question - I've been using Vitacost.com for my supplements - They've got really great prices. I recently heard about Swansonvitamins.com which seems even cheaper. Does anyone have any comments about Vitacost vs. Swanson ? Is one brand better ?
Also, I noticed some conversation about cold caps. When I was considering chemo, I put together a comprehensive research document about cold caps including many academic/medical articles. I used it successfully to get my 1st medonc to do a study and others have used it to persuade their docs about its efficacy. If anyone wants it, pm me and I'll send you my research. From all source, cold caps REALLY DO WORK !
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althea: Please say Hi to Deni..........
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notself-that's great info! I emailed a letter to my Congressman and Senators. Wish i could afford the $250.00 There is a cool link on Life Extentions website.You put in your zip code and it gives you your representatives and how they've voted http://capwiz.com/lef/issues/alert/?alertid=14665781
Mandy-I don't get it either. I told my onco I wouldn't do chemo w/o them. Not that I'm going to do the chemo. I wanted to make the point to him as how important this is.
MTG-I was at my bio-hormone doctor yesterday and she told me of both of those websites. I've been getting mine at webvitamins.com because they're so cheap and offer so many brands. I'll check out the other sites. There is a difference in quality of brands. I try to buy TwinLabs unless they don't make what I need. I sent you a PM, I want the info on the cold caps so that I can start visiting oncologists and spreading the word.
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MTG, I have a friend who swears by Swanson. They sure do have great prices.
I need your help. As you know, I am trying to set up my forums. We need to test drive them. I thought that maybe we could move the political discussion over there, so that people who want to can discuss it and also, so that you can give me feedback on how I need to tweek the format. So later in the day, I hope to have a discussion set up under the "politics of cancer". You must sign in to take part, but you do not have to use a real name, which is not clear with ning. Then please go to my home page and request to become my "friend" and write feedback on problems you found using the forum so far, and any suggestions you have. If you do not know the link, pm me and I will send it to you. Also, I am looking for someone who would like to monitor a private group for me that would only be our trusted members of the natural girls. This way we can share more private information, and others will not have access unless they are allowed to join. Thanks everyone.
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I was watching a segment on Oprah this week where Lisa Ling was reporting about China's beauty boom. Under the old Chairman Mao way of life, Chinese women didn't wear makeup, wore military-style school uniforms and had very plain, pulled-back hair. In the past 10 years, they've adopted much of the western beauty culture....wearing makeup, using perfumes, beauty creams, etc. and even having plastic surgery! I couldn't help but think about all the studies that have shown Asian women to have a much lower incidence of breast cancer, and most of these have been related to diet/nutrition (China Study, etc.), indicating a connection between their lower consumption of animal protein (including dairy) and their consumption of soy as children/adolescents, for example. It occurred to me that their lack of chemical toxicity must also play a factor in their lower incidence. Hmmm.....by adopting western diets (think McDonald's on chinese street corners now) AND by using our chemical-laced beauty products, I wonder how long it will take for their cancer incidence numbers to show a marked increase?
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Did I miss something about Deni? Is she ok??? I'm worried about Julia. She said she would not leave "natural girls". I pm'd her but did not get a response.
It seems like aspirin is the "big thing" now for us. I'm not buying it. I do understand the anti inflammatory idea. I found this site to be helpful. I'm not going to take aspirin or ibuprofen and miss up my tummy!!!
http://www.womenshealthnetwork.com/inflammation/foods-immunityandrespiratoryhealth.aspx
Love to all, Patty
Edited by Mods to update link0 -
That is a very interesting question about the Chinese women....very sad that another society of gorgeous women is buying into the idea that you need to goop up your face to be beautiful.
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yaz and patty - deni is doing great and her husband is feeling good too. we are due for lunch again in a couple weeks - ill tell her the ladies of bcorg say hi.
patty - re the inflammation article - its very interesting. to quote: Boswellia (Boswellia serrata). Also known as Indian frankincense, Boswellia serrata has long been recognized in Ayurvedic medicine for its anti-inflammatory benefits. Today scientists studying extracts of boswellia report that it can switch off key cell signalers and pro-inflammatory mediators known as cytokines in the inflammatory cascade. What is interesting about this herb is that its used for detoxification as well. I used it prior to my surgery mixed with castor oil and lavender. I know there are mixed emotions about lavender but it was prior to the boy boob issue. I have some organic frankinsense that i mix with olive oil and use it as a body moisturizer - i had no idea it was anti-inflammatory. go me
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PS73 - go you!!! I wish I could meet you girls for lunch. Tell Deni that I miss her. Has she taken a break from us??
So, are all you ladies on the band wagon for aspirin??
Patty
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She is just busy and it can be very consuming. She loves all of you all and asks how everyone is. Would love a big powow with the natural girls! If anybody from out of town comes to nyc, im only about 25mins.
I did think about it but Im not interested in taking a daily aspirin. My stomach is already a mess from the supplementing. I think the magnesium is the culprit.
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Patty, I've always been on the band wagon for aspirin...but for heart. So, if it helps with BC too, then that is just a bonus for me. So far, I haven't had tummy issues from it and I don't even use buffered because I chew them up. Sometimes I use the low dose cherry flavored...but I'm really weird in that I actually like the taste of an old fashioned cheap unbuffered aspirin. I also like the taste of Just Pomgranate juice when many don't...so I guess people should not depend on me to tell them if something is tolerable to the taste!:)
I am so happy that I found this wonderful site with all you wonderful, caring, compassionate people. You have gotten me through all of this. I don't know how to thank you in a way that shows how much I really appreciate you all.
So, now that you got me back to daily prayer, I will just continue to pray for all of you every day.
edit...Oh, on the aspirin...I assume it will help the tummy to take the aspirin with food.
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Do they still make those yummy orange baby aspirin? Would those be just as useful? Because I would take those!
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PS73: Go YOU, girl, and thanks for saying Hi to Deni from us. Yeah, I wouldn't take aspirin, either: we all are already doing EVERYTHING anti-inflammatory that can humanly be done, we are not going to do any better than this.0
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PS73,
Stop taking magnesium. You are most likely getting enough through your diet.
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Hi, girls... I had posted a week or two ago that I needed a break... I have been feeling really down lately (not about the DCIS thing, but about my not being able to have a baby)... I miss you girls and am back (though I'm still pretty down and don't know how much I'll be posting -- I don't want to be a downer). I've missed you all and see I have a LOT of catching up to do!
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Welcome back and hugs. {{{{{you}}}}}
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Sorry, don't know about the yummy orange. It seems like I saw some but not sure.
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Hi Julia! Nice to see you!
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Hi Julia! Yep, nice to see you!!!
Ok ladies, I am searching for a good multi-mineral vitamin. Any suggestions. I don't want one that you have to take 6 a day. I don't want iron or soy. I'm starting to think it just might be impossible.
Patty
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Hi Patty-
I have been investigating multi-vitamins as well....I have been taking just the separate nutrients so far - but I have added so many that I figure I can save some money and just continue to take extra D, C and whatever else I need. I have been looking for a gluten and yeast free version that also does not contain copper or iron. Here is a twice a day formula. They also have a more complete version that is 6 caps a day. It is hard to find a place that discounts Designs for Health products - but I think Total Health and also LIfe Science Pharamcy do discount.
http://www.rockwellnutrition.com/Multi-Twice-Daily-by-Designs-For-Health-DFH_p_941.html#tablist
Good Luck!
Beth
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I take the Vitamin Shoppe brand of mineral multi. It does not contain iron but does have some soy and wheat. It is so hard to get around this stuff. I break the tabs in half and take half twice a day. I also try to keep changing brands of almost every supplement I take to avoid continuously taking the same thing.
MBrowning, I remember seeing a special Lisa Ling did a while ago on Chinese women, adopting western ways. I can understand their zeal. It must be so depressing to have lived under Mao and to have to wear that grey all the time. But it does bug me how young women seem to be even more obsessed with looks than previous generations. I am so glad I grew up in an era when no one cared what brand was on your butt and no natural beauty and brains were de riguer. Girls have so much pressure than we had. I also am convinced that the rise in breast cancer with young women is all the toxins they are exposed to, both in beauty products and in their diets. I have already started a forum on this topic on our sight, and I hope you guys will add references to studies about it. We need to work hard to educate younger women about prevention. I have someone who owns a natural cosmetics shop who is going to blog for me. They have studied all kinds of brands and will be giving advice. We will link to their online store in exchange for them providing information to our members.
Patty, interesting info about the frankensense. No wonder it was so valued in bibical times. Amazing how we are now going back to our roots. I will be looking for more info on beneficial oils.
Big hugs to you Julia.
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notself - the magnesium i take is mixed with calcium and I take the calcium for my D which was really low. Since you mention it though, now im thinking i might get enough of both mg & ca. i eat broccoli/kale/almonds daily, not so much cheese/dairy but other foods that contain calcium so yes, i definitely do get enough mg and possibly enough ca. yah. ..i have some thoughts about mineral absorption and how the magnesium was helping if i have any aluminum or mercury floating around in my system blocking my minerals. I would take malic acid if I could easily buy it at a healthfood store but since i cant, i eat an apple a day which contains natural malic acid. This attaches to any mercury or aluminum and frees up the magnesium so it can absorb into your system.
I scanned and copied my vitamin and mineral label but its not pasting here for some reason. I take xymogen w/o iron - I just realized I should be taking four capsules a day and Im only taking one. great.
another two supps my dr told me about.. one is called oncomar http://www.xymogen.com/2008/formula.asp?code=000254 is anybody taking this? its fermented wheat germ. I was already taking so much that I decided not to add this I recently cleaned out my enormous health binder and found this info. the other one is called oncoplex - this is sulforaphane glucosinolate from broccoli seeds http://www.theroadtohealthyliving.com/store/proddetail.php?prod=1637 anyone?
welcome back julia!!
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I take Oncoplex - I have heard great things, from both my pharmacist and functional medicine doctor, about the fermented wheat germ from Xymogen - but unfortunately I can't take it due to gluten allergy.
Beth
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Thanks Beth.
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Hi, Patty ~ Here's a link to information on the nutrition brands UCLA has researched and recommends. I don't use any of them yet, but there's some good info' on their website, and you might be able to find them more reasonably elsewhere. (I'm sure they're at or close to full retail on their site.)
http://www.simmsmanncenter.ucla.edu/reflections/section/nutrition.asp
I also just noticed that they now have something posted from David Servan-Schreiber's talk. I haven't seen it yet, but I'm sure it's worth sharing:
http://www.simmsmanncenter.ucla.edu/information/insights_summaries/insights_summaries.asp
{{{Julia}}} ~ Sorry you're still feeling down. We care, so please don't ever feel you're being a downer for expressing your true feelings. Deanna
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Deanna-
Thanks for the links - there is a lot of great info at the UCLA website. How fortunate for you to be so close to them!
Beth
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The Mathematics Of Cancer
Robert Langreth, 03.15.10, 6:00 PM ET Larry Norton sees some of the toughest cases as deputy physician-in-chief for breast cancer at Memorial Sloan-Kettering Cancer Center. He has access to the most advanced imaging machines, the best surgeons and numerous new tumor-fighting drugs. But often the fancy technology helps only temporarily. Sometimes a big tumor will shrink dramatically during chemotherapy. Then all of a sudden it comes back in seven or eight locations simultaneously.Norton thinks adding more mathematics to the crude science of cancer therapy will help. He says that oncologists need to spend much more time devising and analyzing equations that describe how fast tumors grow, how quickly cancer cells develop resistance to therapy and how often they spread to other organs. By taking such a quantitative approach, researchers may be able to create drug combinations that are far more effective than the ones now in use. "I have a suspicion that we are using almost all the cancer drugs in the wrong way," he says. "For all I know, we may be able to cure cancer with existing agents."His strategy is unusual among cancer researchers, who have tended to focus on identifying cancer-causing genes rather than writing differential equations to describe the rate of tumor spread. Yet adding a dose of numbers has already led to important changes in breast cancer treatment. The math of tumor growth led to the discovery that just changing the frequency of chemo treatments can boost their effect significantly.In the future Norton's theorizing may lead to new classes of drugs. Researchers have always assumed tumors grow from the inside out. His latest theory, developed in collaboration with Sloan-Kettering biologist Joan Massagué, asserts that tumors grow more like big clusters of weeds. They are constantly shedding cells into the circulatory system. Some of the cells form new tumors in distant places. But other wayward cells come back to reseed the original tumor, making it grow faster. It's like hardened terrorists returning to their home villages after being radicalized abroad and recruiting even more terrorists, says Massagué, who in December showed that the self-seeding process happens in laboratory mice. If this model works in humans, it will open up new avenues for treatment. It suggests that to cure cancer, doctors need to come up with drugs that stop the seeding process. These drugs may be different from the current crop of drugs, which are designed to kill fast-dividing cells.Among other mysteries, self-seeding may explain why tumors sometimes regrow in the same location after being surgically removed: not necessarily because surgeons failed to remove part of the original tumor but because some itinerant cancer cells returned later to their original home to start a new tumor in the same place.Norton, 62, got a degree in psychology from the University of Rochester, then an M.D. from Columbia University. For a while during college he thought he would make a career as a saxophonist and percussionist. The remnant of that dream is a vibraphone in his office in Memorial's new 16-story breast cancer center.Ever since he was a fellow at the National Cancer Institute in the 1970s he has been trying to come up with mathematical laws that describe tumor growth. He treated a lymphoma patient whose tumor shrank rapidly during chemotherapy. A year later the cancer returned worse than ever. The speed with which the tumor grew back didn't jibe with the prevailing notion that most tumors grew in a simple exponential fashion.Working with NCI statistician Richard Simon, Norton came up with a new model of tumor growth based on the work of the 19th-century mathematician Benjamin Gompertz. The concept (which other researchers proposed in the 1960s) holds that tumor growth generally follows an S-shape curve. Microscopic tumors below a certain threshold barely grow at all. Small tumors grow exponentially, but the rate of growth slows dramatically as tumors get bigger, until it reaches a plateau. A corollary of this: The faster you shrink a tumor with chemo, the quicker it will grow back if you haven't killed it all.Based on these rates of growth, Norton argued that giving the same total dose of chemotherapy over a shorter period of time would boost the cure rate by limiting the time tumors could regrow between treatments. The concept got a skeptical reaction initially. "People said it was a total waste of time," he recalls. It took decades before Norton was able to prove his theory. But in 2002 a giant government trial showed that giving chemotherapy every two weeks instead of every three lowered the risk of breast cancer recurrence by 26% over three years, even though the two groups got the same cumulative dose.
Today Norton's "dose-dense" regimen is common practice for certain breast cancer patients at high risk of relapse after surgery. Timing adjustments are also showing promise in other tumor types. Last October a Japanese trial found that ovarian cancer patients lived longer if they received smaller doses of chemotherapy weekly rather than getting larger doses every three weeks, according to results published in The Lancet."Larry has been one of the real thinkers in this area," says Yale University professor and former NCI head Vincent DeVita. But designing better treatment schedules doesn't get as much credit as the glamorous business of inventing drugs.Norton's latest theory about how tumors grow is derived from Massagué's pioneering research. It is consistent with Gompertz's growth curves and ties together two essential features of cancer that researchers had long considered separate--cell growth and metastasis.Their collaboration started five years ago, when Massagué called Norton and shared a startling finding that was emerging from his laboratory. Massagué was studying how tumors spread from an organ such as the breast to the lungs, brain and other faraway places. He took human breast tumor cells, implanted them in mice and waited for metastases to occur. He analyzed cells that had metastasized to see what genes were overactive. None of the genes implicated in the spread of cancer to distant organs had to do with excessive cell division, it turned out. Instead, they all related to the ability to infiltrate and adapt to new environments.The finding seemed to contradict doctors' impression that the fastest-growing tumors are also the most likely to spread. Pondering how to reconcile the two ideas, Norton and Massagué theorized that tumor cells released into the bloodstream sometimes are attracted back to the original tumor and help it expand.Self-seeding may explain why large tumors tend to grow (in percentage terms) more slowly than small tumors: It could be that growth is a function of surface area rather than volume. Tumors that are efficient seeders may kill people by promoting the seeding process, not because they have a higher exponential growth rate.It took Massagué four years of work to prove that self-seeding occurs in laboratory mice. Now comes the tricky part: coming up with drugs that block tumor seeding. Massagué and Norton have identified four genes involved in seeding and are testing for drugs to block them. Convincing drug companies to go along could be difficult; it's easier to see whether a drug shrinks tumors than to see whether it stops evil cells from spreading. But Norton believes that doing this hard work may be the key to a cure.
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Julia, I, too, would still love to see you posting here even if you're feeling sad, depressed, scared, upset, angry, or whatever you're feeling. It is all okay. Please try not to worry about being a downer here, because we all feel like that at times and to various degrees, and are here to support each other. Of course, you don't HAVE to post here if you don't really want to...are you working through your feelings/difficulties in other ways, with other people? I hope you have support from someone/somewhere.
I can relate. For several days now, I've either been crying or on the verge of tears, getting irrationally angry over small/insignificant things (e.g. I nearly kicked something when I couldn't find a pair of matching socks), and I've just been having meltdowns in general. My reasons for these feelings are different - I'm going through too many transitions in a a short amount of time. In the next 3 weeks, I am moving (which may mean having to give up my beloved cat), quitting one of my jobs, receiving my Oncotype score, and starting radiation, and I just had to pay a month's salary to get my car repaired so it will pass inspection. It's too much at once and I'm freaking out. Two days ago, I went to my favorite yoga class, taught by one of my best friends... but a mere 20 minutes into class, my quads weren't strong enough to stay in Utkatasana as long as everyone else was holding it for, and I kept losing my balance in the high lunge and getting pissed off at myself, and I just went into child's pose and stayed there while everyone else did their sun salutations. But then the tears came rushing up and the accompanying lump in the back of my throat was so big I knew I wasn't going to be able to pull myself together enough to continue with class - and it wasn't REALLY about the yoga poses, of course, it was just all of my issues coming to a head. I literally abandoned my mat right where it was and fled from the room, ran right out of the studio, and ran deep in the forest to cry and cry and cry all alone for the remaining hour of class. Then I went back to the studio to collect my mat. And my friend (yoga teacher) is now encouraging me to not run from it like that, and to try and stay there on my mat and let my emotions come up and out, because that's what class is FOR and it's a supportive environment, and everyone else feels what I'm feeling at various times, whether they let it show or not. I'm not sure if I can allow myself to completely lose it in a class full of strangers, but I see her point. She is trying to make sure I am dealing with my emotions somehow - whether it's through yoga, therapy, a walk in the woods, or a combination of those things and other things - instead of just running from them. It's so hard and I feel so lost at times. But I keep thinking of Dr. S-S's book and his insistence on the importance of taking care of our minds and spirits... the most recent, revised edition of his book has a re-written, expanded chapter on that, because he was saying that so many people focus mainly on the dietary changes, nutrition, supplements, environmental toxins, etc., and tend to neglect the mental/emotional/spiritual changes that are crucial to health. And I'm one of those people.
I have had "meditate" on my to-do list for weeks and haven't yet made the time to do it. Argghhh... I will keep trying.0
