Survivors who have used only alternative treatments
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Makes sense. Thanks.
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Wornoutmom, since it's your thread (nominally), I wanted to address a few things you just mentioned...
You say that before the Her2 positive cancers were identified, women were given chemo that was ineffective. That's not my understanding at all. Her2 makes cancer grow even faster, so those cells would likely be quite responsive to general chemotherapies. Herceptin was an additional step forward in how to treat Her2+ cancers, because the drug directly targeted those receptors. That's probably why Herceptin and chemo are typically given together -- they attack the cancer cells in different ways, making it more likely that all will be destroyed. It wasn't a medical error that Her2 cancers were not understood as well 20 years ago, it was just something that hadn't been discovered yet. (And surely, there's a lot about breast cancer that hasn't been discovered yet.....even though there is a lot that already has. We're all eagerly awaiting the new discoveries!)
You also asked why there aren't studies on alternative treatments. That's an excellent question to ask alt providers. They should be doing the studies to prove the efficacy of their treatments. After all, they have the patients right there in their centers/practices and good results would benefit them the most. If they got bad results (showing ineffectiveness), though, they'd probably lose their livelihood....which may explain why they don't do the studies (?)
Wornoutmom, you also bring up the idea that eating meat raises estrogen levels and you wonder why docs don't tell us to avoid meat. Let's say that you're correct (I haven't personally researched it) and meat does raise estrogen levels. It doesn't change the fact that the primary source of estrogen in the body is our ovaries. That's where a ton of estrogen comes from...meat might add a fraction. So docs obviously worry most about the greatest source of estrogen (ovaries) and think about ways to stop that production. OR, they recommend tamoxifen which is an estrogen blocker, essentially. It binds to the estrogen receptors on cancer cells and stops their growth. So it doesn't matter where the estrogen comes from -- ovaries or meat consumption -- tamoxifen will block it.
But if you only swear off meat, and you don't stop the estrogen from your ovaries OR block all estrogen with tamoxifen, your cancer cells will still have access to plenty of estrogen and they could continue to grow. Your doc is probably thinking that it's not going to be very helpful for you to just avoid meat estrogen, when your own estrogen is still going strong...in that case, you might as well enjoy the meat now, because if there are cancer cells remaining in you, they are also going to be feasting.
You also wondered why we didn't ask you if you had heart issues before encouraging Herceptin. You suggested in a number of posts that you are a very healthy individual, so we'd have no indication that you have heart problems (and I'm sure you do not.) But also, your oncologist would not give you Herceptin if you had significant heart problems. It's your doc's job to worry about if your body can handle the treatments. A good doc would check you for potential problems before they ever gave you the drug...I know mine checked me constantly for possible treatment-related issues.
Best of luck in beating down your cancer!
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On another note...just came across this article: "Lung Cancer Death Rates for Women Decline"
http://www.cbc.ca/news/health/story/2011/03/31/cancer-lung-death-rates-us.html?ref=rss
Some snippets...and I'm curious to hear what those who say "we've made no gains against cancer" have to say about reports like this one? (Yes, I know, we could do more, we need to do more, but there has been some progress):
Lung cancer deaths rates among U.S. women fell for the first time in 40 years, according to a new report ...in Thursday's online issue of the Journal of the National Cancer Institute...the decline came about 10 years after lung cancer deaths in men began to fall, a delay that reflects how women tended to take up smoking later.Overall, cancer death rates have continued a decline that started in the early 1990s, the authors found.Death rates fell an average of 1.6 per cent a year between 2003 and 2007, the latest data available....The declining death rates were mostly from gains against leading types of the disease, including colorectal, breast, prostate and, in men, lung cancer.0 -
I would like to hear from survivors of alternative treatments too. I had such bad side effects with arimidex that i decided to get out of it. I need my own self back. Is there any serious research about people not taking any AIs after surgery and radiation?
Thank you for all the infotmation. This should be presented by the dr. we shouldn't have to struggle so much to get information.
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Beeb75, you wrote:
".....and I'm curious to hear what those who say "we've made no gains against cancer" have to say about reports like this one?......"
"They" may have this to say:
http://www.preventcancer.com/losing/nci/manipulates.htm
http://www.pivot.net/~jpierce/Brief Guide to Statistical Manipulation.htm
http://www.cancerdecisions.com/content/view/66/2/lang,english/
http://www.cancerdecisions.com/content/view/230/2/lang,english/
http://annieappleseedproject.stores.yahoo.net/hedoandpamas.html
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Breast cancer deaths have declined (again) as well.
I stopped eating meat when I was 21 and was diagnosed with breast cancer, highly er+, when i was 42. I'm still a vegetarian for other reasons, but it didn't do anything for me, cancer-wise.
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Thanks, Yazmin. I particularly like the cancerdecisions website which calls itself "the trusted source for cancer news and opinions." And has this disclaimer at the bottom: "The information on this site...is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider." Wha-huh?
Annieappleseeprojects says something similar: "Remember we are NOT Doctors and have NO medical training."
Reminds me of the old saw: "Who are you gonna believe? Me? Or your lyin' eyes."
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Txispa,
the word survivor is subjective, it can mean different things for different women.
For me, my mother is a survivor of her first agressive conventional treatment which is bilateral mastectomy with lymph node removal.
but that does not guarantee her being a survivor of cancer. because as I said, there is no CURe for cancer , at least not yet. We just borrow time and make our decisions based on what we prioritize, quantity or quality of life.. right now I believe its either of the 2.
please refer to athena's post regarding the decision to forego AI...
there is no "proper clinical study" for women foregoing AI in favour of alternative study.
however, I said this many times.. although Tamoxifen is not AI, both are classified as endocrine theraphy. my mother was prescribed Tamoxifen, but she refused it and was on alternative treatment for almost 14 months now.. her cancer is more agressive than yours Her2+, but she is still alive and having the best days of her life, with no side effects of endocrine theraphy, chemo and rads..
will she live more than 5 years, no one knows..
again read Athena's long post on why you have to make that decision yourself, after you have discussed this with your oncologist..
do you have someone with you who can help you through this? at least help you research about the latest findings both conventional and alternative treatments?
please do not overstress yourself reading through this thread.. you need your sleep and your melatonin..
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WOM, gracie and athena,
I have a partial good news for you. In Nov 2009, the US. Preventive Services Task Force released a new guideline on mammograms--- these new guideline practically divided the conventional world into two.. in the same way, that this thread is divided into 2 camps..
but am glad that at least now there is a panel of conventional medical professionals who are taking an honest, unbiased approach to research.. although I have a feeling that they are trying to be also sensitive and politically correct so as not to get the ire of the rest of their peers.. anyway, they were still attacked..even breastcancer.org is against it.
their recommendation:
The decision to start regular, biennial screening before the age of 50 should be an individual one and take patient context into account, including the patient's values regarding specific benefit and harms.
although they (the task force) is still recommending it to women 50 years and above...they agree that mammogram exposes younger women (who are going through the most vulnerable phase in their life such as adolescence, pregnance and child borth) to radiation..as well as unnecessary stress to breast tissue.
they even proposed ultrasound for younger women (40 year old and below) specially if these women does not belong to a family of BC patients..
I just hope that they add in thermography as well as an alternative to mammogram as this is does not expose women to radiation and unnecessary stress to the breast tissues.
we are getting close to getting what we want, an honese, unbiased approach to research on both conventional and alt theraphy and diagnostic tests.
we just have to keep ourselves in the open-- so more and more will come out in the open and the people who are in a better position (since they have the money or the skills or both) to sponsor a fair trial-- will be motivated to do this for us..
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Txispa,
I think your question should be a very simple one to answer -- there have been numerous studies on the issue. Your oncologist should be able to tell you how taking or not taking an AI affects your risk of recurrence or death within 10 years, have you tried calling the office to get that risk quantified?
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beeb75,
meat/dairy has already been proven by clinical trials to increase estrogen load (this is the reason why they are advicing women aged 13-21 to eat organic meat/dairy to decrease the estrogen load.
about the ovaries-- yes it does produce estrogen,I firmly believe that removal of any organ for the purpose of suppressing something that is natural is harmful to the body.. your ovaries are there not only for the purpose of producing babies but for so many other reasons.
Even the surgical removal of tonsils to cure recurring tonsilitis is now also being frowned upon by the medical community.
we prefer to let our organs do what it is supposed to do, and prevent unnatural substances such as Tamoxifen or other endocrine theraphy to get in to our system and for those unnatural substances that get in anyway (out of our control)-- we try to find a way to let out in a mild unarresting manner.
this is just us (defence against an aggresive foe). if you prefer agrression against an agressive foe- its totally up to you. its your choice..
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ferretmom,
in that case, I will ask the oncologist that we are scheduled to see on 4th May. meanwhile am preparing all my questions about Her2+ and Herceptin as well as emodin
wish me luck!
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The estrogen produced by our ovaries is not "good" if you have had an er+ cancer. Its actually fuel. I agree with you, to a certain extent, about removing ovaries which is why I chose to shut mine down with zoladex, rather than removed them, when I switched from tamoxifen to an AI. However, the studies are very strong that if you have the BRCA mutation, you are better off having your ovaries removed.
I understand that your mother, who has the mutation, won't agree to additional surgery but I hope she is having regular ultrasounds of her ovaries.
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MOC,
my mother do have er+ cancer, however she is post-menopausal - so the egg and hormone producing activity has been NATURALLY shut down...
however, do you think shutting your ovaries with zoladex is better than removing it altogther? zoladex made your ovaries stop producing estrogen right?
how does it affect your well being then? no SEs? just asking.
I do agree that the BRCA mutation and the her2+ diagnosis, still threw me off balance. without these diagnosis, am 100% sure that her life will be extended by her alternative theraphy (not just giving her a better quality of life)..
again am not dismissing all possible conventional treatments on her2+ yet..not sure if there is something that the conventional approach can do about the BRCA mutation..
all I know is that tumeric/curcumin/yellow ginger prevents gene mutation. but not sure if it can reverse the mutation (make a mutated gene back to a normal gene)..
that is like turning bread back to flour..
she is scheduled for an ultrasound in 2 weeks time, at about the time we will get her 2nd hormonal profile..as well as thermography for her left breast.
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Txispa,
I think you mentioned in one of your posts that you are 60 years old..so you are post-menopausal, this is also an additional information for you, your ovaries have naturally shutdown its ability to produce eggs and hormones including estrogen.. so it helps by not adding to your estrogen load..
you are also at an early stage with no nodes removal-- and even her2 negative-- you have better odds than my mom
you dont have to worry about the her2 positive and BRCA gene 2 issue,,
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"all I know is that tumeric/curcumin/yellow ginger prevents gene mutation. but not sure if it can reverse the mutation (make a mutated gene back to a normal gene)."
Yes, in obscene quantities, according to my doc. Not in tab form.
Regarding ultrasound, it is not done in lieu of mammography, it doesn't work that way. It can find or scope out further what is found on mammogram, it is not meant to be a replacement.
As mentioned, thermography is debatable--do some research on Susan Love.
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Txispa - go and try acupuncture. My onc suggested it. It's been proven to be helpful with the hot flushes. I've only had 2 treatments so far and I can see a slight improvement already. Also, if you can't tolerate Arimidex, there are other AI's you can take like Femara.
Nanay - Arimidex is having an effect already - my last mammogram shows less dense breast tissue. To me it's good to see that taking an AI does do something. Please pursue the Herceptin with the onc - the SE's are almost non existent - it's an absolute walk in the park. If you can get the onc to agree to give her herceptin alone, I just hope the long delay in treatment doesn't compromise her long term survival.
Sue
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Our bodies continue to produce estrogen after menopause through the adrenal glads. Thats why post-menopausal women take AIs, to reverse that process as much as possible. And I feel very good. Just ran my first marathon.
Nanay, is your mother's ultrasound of her ovaries? Thats what I was referring to.
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Member: I can see you are still running all those marathons. Good for you! I am on your team (in spirit). I remain convinced that being an athlete has helped a whole lot in your quest for health, I've been thinking about that every time I read one of your informative posts.
I have also been thinking about trying to enter a marathon, some day (just some day....), but I am looking for a non-pinkwashing-one; and one that would not be too, too, hard for me (a raw beginner). I just don't know if I can take it.
Oh, well, hopefully I'll end up finding the right one for me.......Meanwhile, you go, girl!
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Hey Yazmin~
Please let me know when you find one...
I have been invited to participate in multiple pink runs which I cannot do. My mind will not let me at this time.
I also would need one that was not too, too hard for me. (Used to be a gymnast but that was MANY years ago...)
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Ang7: I'm telling you: I HEAR you.
Let's keep on looking (it probably won't be easy..........
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Beeb, you said... If they got bad results (showing ineffectiveness), though, they'd probably lose their livelihood....which may explain why they don't do the studies (?)
I thought only registered doctors could claim to treat cancer. In Australia our naturopaths aren't licenced to treat cancer and would be prosecuted if they did. They can get around it by treating general health or other conditions, but most wouldn't risk their livelihood and reputation by not advising a patient to get medical treatment. Also I read that the average PCP would only get two patients presenting with a new cancer each year, so a naturopath who sees less patients per year, spending more time with them, would not have enough patients for any type of study.
One highly respected man in Australia has been running a health retreat for decades, with medical professionals on his staff and he's married to a Dr. but they have still not been able to complete human trials into alt cancer treatments due to red tape. Although most of his cancer clients die, his record for complete remission of more than 5 years from fully documented incurable cancers is statistically significantly higher than the 1% that doctors claim. If only he could prove it.
So why don't oncologists lose their licence when they pump us full of ineffective drugs that harm us and then we die anyway? Oh yes, I know, because those drugs buy us priceless extra time, and they are protected by their licence and the "standard of care", even if the treatments fail to extend life.
I'm just trying to point out how we tend to judge "proven" and "unproven" treatments so differently though in most cases they both have the same intentions, alts are just not given the same opportunity to treat and trial their methods.
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LtotheK- Just to clarify, US don't necessarily confirm what a mammo shows. They see different things. US can differentiate between cysts and masses. Mammos see calcifications and other things. Many, many women had clear mammos where their BC did not visualize. I was someone who was "mammo occult", had 14 clean mammos in 14 years. I found the lump myself and it was confirmed with US not mammo. I am now having mammo plus US every 6 months and MRI the other 6 months.
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Hey Sheila - not a good recommendation of that guy if most of his cancer patients die - just proves alternative treatments dont' work!!
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suepen: that's not what Sheila said. I'll leave it with you to read her post more carefully.
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This is what she said "Although most of his cancer clients die, his record for complete remission of more than 5 years from fully documented incurable cancers is statistically significantly higher than the 1% that doctors claim"0
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Live studies don't need to be done - retrospective studies can be done on those who chose alternative treatments - so where are the all the survivors we can study?
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Sue, he can't treat their cancer, he uses diet, meditation, visualisation, hope, Qi-gong and other psychological methods to help them through their conventional treatments and sometimes to come to terms with their approaching death. Most are at the end of their conventional treatments and only a miracle would save them.
Dr Gawler is a veterinary scientist who continued to treat animals after he started his retreat and also attained a master's degree in counselling. He was also honoured with an Order of Australia Medal for his work. The retreat came about after he famously recovered from bone cancer that had spread around his body and lungs and his chest looked more like a rocky outcrop. He was able to visualise the bony cancer in his lungs receding and they did, but he had trouble controling the cancer in his hips and spine which nearly killed him. He kept it under control for years when he should have been long dead, as osteo sarcoma is fast and deadly. Eventually all cancer was confirmed gone when he had one of his lungs removed about 20 years after beating cancer due to long term damage. All this is well documented in medical documents that are publicly available, however he knows that only exceptional cancer patients will achieve these results. The surgeon who treated him is now some sort of consultant for his retreat, although I should add that Dr. Gawler retired last year.
The mind is hard to study as they say we have around 60,000 thoughts each day and meditation for one may be totally different for 100 other people. They have found using fMRI's that monks who meditate have exceptionally happy brains. I'm simplifying to be brief. I'll answer your other question in another post or this will be ridiculously long.
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Sue, I believe that long term studies are being done but the red tape and cost have been the main barriers. Meanwhile there is a book which tells the personal stories of around 26 long term survivors, though they are not documenting their evidence in the book, that is for proper studies. The book is for hope. Hope has been shown to be one of the factors in studies to see which factors were common in long term spontaneous remissions.
The book was written by one of his retreat clients who had mesothelioma in the upper abdomen. He is still alive after around 17 years if I remember correctly, but his mesothelioma has not been cured, merely stopped growing. This would normally kill quickly so he is still a miracle. Others in the book had lung, brain, melanoma with mets, three with metastatic breast cancer, just about every cancer. One of the BC women is a doctor who ran a rural medical clinic with her doctor husband in a remote area where they had to cover everything including births, surgery, everything unless a flying doctor was required in extreme cases. Several of them had recurrences after many years and beat it a second time by going back to their methods which had lapsed.
To me these second remissions are the proof that whatever they were doing is repeatable. To go into long term remission from terminal cancer is a miracle for anyone, but to do it twice and remain cancer free for over 5 years is hard to put it down to anything but the methods used.
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