2+ year survivors with alternative therapies

cp418

angie27 - try this website and in the search box enter 'breast cancer HER2'.

www.medicalnewstoday.com

yellowfarmhouse

Dear all,

thanks for the insights-- I did mostly traditional stuff but I believe in eating organic and healthy as much as possible.  Alaskaangel, I need some hints on how to be in the sun in winter!!  I live in WI and it's been a cold winter!    But, seriously, I try to be outside with sun on face as much as possible and I sit in my sunporch.  I also tan once a week for about 10 minutes in hopes of getting more vitamin D. 

blessings to you all in your health and recovery,

Wendy

wendy

rubytuesday

Wendy, Are you talking 'tanning bed', if so, does that work for 'upping' your Vit D???  Best wishes

anondenet

To answer your question:

I'm 15 years out as a survivor since my mastectomy. I had a small but nasty ER positive aggressive tumor. I did a lot of research then refused the standard adjuvants. Interesting to find that radiation has no survival value. Chemo was statistically insignificant. I come from an academic family and learned how the stats were manipulated to show relative risk statistics which are bogus. 

I found an email discussion group (The Amazon Email Discussion Group) where others doing alternatives did research and supported each other. There are many long term survivors there which has been very encouraging. They know all about alternatives - which ones are good and which haven't been tested enough.

Plus, I was lucky to have a breast surgeon who respected my choices and who confided that chemo had no benefit for breast cancer but he had to refer me to an oncologist in order to keep his license. He was pro-chemo for other cancers, however, so this gave him credibility.

rubytuesday

anomdenet, Aren't the AMAZONS amazing???  I have learned so much from them but have a hard time keeping up with the emails.  Best wishes!

erickcarpenter

anomdenet could you send me the site for the Amazon Email Discussion Group? I would like to forward that to my wife, who too, chose not to do chemo and rad. AND we found a medical oncologist who is supportive. (hard to find)

Thanks!

anondenet

You can sign up for the discussion group here:

http://breastcancerchoices.org/amazon.html

Caring partners have also participated on the group in the past so you would be most welcome. It might be inspiring to your wife to see long term survivors who have not done radiation or chemo. A few there have done traditional treatment but the discussion focuses on going forward with "non-standard therapies."

erickcarpenter

anomdenet,

Thank you! My wife is a huge proponent of "non-standard therapies" as that is what resonated with her. Again, thanks!

FloridaLady

I'm going to sign on too.  See you there...

Flalady

dizzybuff38

Wow, just found this thread as I usually look at the UK bc site.Quite fascinating. Baking soda Erik...I am a cordon bleu trained cook and I have always been intrigued why it is in so many recipes...why does it make so many dishes "rise?" - never figured that out yet, but it does work in the culinary world. As to maple syrup, is it analogous in some way to Manuka honey?

I can't possibly comment on all the diverse opinons on this thread - I am not scientific, but anyone deciding to explore alternative therapies may like to read Gloria Hunniford's book about her daugher Caron Keating, who went to the over side of the world, Byron Bay in North East Australia, with two very young sons, in her search for a "cure" to her breast cancer. She did have some conventional treatment and one mastectomy (only 34 yrs old when initially diagnosed with a small stage 1 cancer) but endlessly pursued many alternative therapies...coffee enemas, colonic irrigation (in a mud hit, with a hose pipe and and wooden bucket), then uprooted her family again to Switzerland for some experimental treatment.  She died age 41, after 7 yrs of alternative therapies that wreaked havoc on her husband, children, mother and brothers. What a sad waste of a life. I found the book harrowing and very depressing and almost gave up half way through. It was a very salutary experience for me who did all the conventional allopathic treatments, surgeries, chemo and rads whilst battling also with Crohn's, and thankful to say I am still here today.

I guess we all have to do what we want, but I trust my conventional doctors and the treatments that have had the benefit of long and considered double blind trials before quack treatments and absolute charlatans. Okay, off my soap box for tonight.

Liz, in England.  

anondenet

Liz,

I hate to break it to you but neither chemo or radiation has had double blind trials. You say you trust your conventional doctors. I hope they're not the ones who told you rads and chemo were double blind tested.

Radiation therapy has been followed  in the literature a long time. It prevents local recurrence in approximately 7 women out of 100. It provides no survival value. Women don't die of local recurrence anyway.

Worse: After ten years, breast radiation often shows damage to the coronary arteries which may lead to a shortened lifespan.

You can look this up.

Anom

Stop trustin', start readin.'

rubytuesday

Liz, I have to agree with Anom.  Chemo has NO double blind studies....not sure about radiation and the double blinds but I do know it does not increase your longevity.  In fact, those were the first words out of the 1st radiation oncologist's mouth who I consulted with.  We all know that radiation causes cancer....no denying that.  I don't know anything about the book you started to read but it does sound like a bit of a wild goose chase but you also said she did some conventional treatments.....hmmm...doesn't seem like they worked either????  Then again, there are no guarantees with conventional medicine either...if there were, we wouldn't be here.  Best wishes!

P.S. I also wanted to add that the purpose of this board is to discuss alternative/complementary/holistic treatments.   

stacey2930

Amon,

               yes, radiation could potentially cause damage to coronary arteries but you failed to mention this is if you have  left breast radiation.Right breast radiation shows no significant increase in damage and now radiation is so precise with new technologies I would be willing to bet the possible side effects are even lower.

stacey2930

"I also wanted to add that the purpose of this board is to discuss alternative/complementary/holistic treatments"

Rubytuesday, I think many of use do both alternative and conventional medicine. I take tumeric, vitamin D, Biotin, Drink gallons of green tea, meditate, accupunture...etc but I also had radiation treatment 2 years ago. I didnt do chemo though, I thought radiation was the lesser of the two evils and I felt pretty confident with the data. My sister on the other hand was 38 when she was diagnosed with BC 18 years ago, she took the chemo route, back in 1989 it was relatively new for the treatment of breast cancer. She is doing fine thank God. I am definately more into holistic/alternative medication than ever before. You know those Chinese must know something they live to be 150!   

FEB

Liz, I hate to make you feel that you are not welcome on this thread because I know you think you are trying to help, but please respect that we are here to support each other with alternative and holistic therapies. Many of us have chosen to do combinations of different things, and it is so helpful for us to have a forum to learn from each other, so that we can make our own personal choices. We can all take all kinds of advice from each other, weigh it in our own hearts, and choose which path we want to follow. It is not helpful for any of us to hear horror stories about those who have valiantly fought and lost their battles with cancer on this thread. We are here to be more optimistic and to feel that we are making positive choices. Reading your post about the woman who died really upset me. My heart goes out to her. But I do not want to sit around and worry that cancer will come back. I want to be proactive and do whatever I can to make sure it doesn't. Stories like that makes what we are doing seem hopeless, and I do not want to hear about the worst case scenerios. Have you ever heard of the power of positive thinking? That is what we are trying to promote here.

erickcarpenter

stacey, part of the problem with right breast radiation treatment, is what our radiation oncologist brought up.

If you have to radiate near the chest wall, chances are, you will "nick" the lung, and if that happens, you often end up with lung damage or "radiation pneumonitis" and with that exposure can sometimes causes secondary cancer, or you can end up with lymphoedema, brachial plexopathy, impaired shoulder mobility, and even secondary malignancies. 

Some of these are not as likely as others, but my wife felt that the risk was too great to subject herself to this treatment or chemotherapy. Especially after she read the statistics behind the scenes. I think at that point she decided to go a different route, that 1.5 years later, her choice has been effective for her.

As for precision with radiation, they are better, but they can only "shoot" radiation in a straight line, and whatever is in the way gets radiated.

I won't go into the personal feelings towards "conventional medicine" as each person needs to use their intuition and education to find their own path. If you choose to trust your oncologists then by all means, pursue that path.

anondenet

Stacy,

You have been given fictitious advice if you were told the "new radiation" is more precise and therefore not damaging to the coronary arteries. The "new" radiation hasn't been around long enough to make this claim. Radiation damage takes years to manifest. Thus we will not know if we are guinea pigs for years.

The 7% beneifit to prevent local recurrence (which people don't die from anyeway) is not nearly enough to justify less overall survival.

Most current breast oncology medicine does not focus on survival. It focuses on "disease-free survival time."

With all due respect, Stacy, please VERIFY your oncologist's claims about the "new" radiation before repeating them on this board. There is a lot of gossip surrounding oncology practices that are not borne out by fact checking.

I have had conversations with a few oncologists which were stunning in their inaccuracy. I asked, where did you get that information and they either named a former mentor or said it was the "standard of care" (consensus).

Neither of these answers addresses the actual research. And it shows they never checked the info personally before sentencing their patients to damaging treatments.

Breast cancer research is not rocket science. It just takes wanting to do it and learning from the lay researchers who have gone before us.

It doesn't take much time to figure out that consensus-based medicine is not evidenced-based medicine.

FloridaLady

No you don't die from recurring localized cancer at first but it does kill you over time.  Also it is just about "impossible" to treat conventional or alternatively.  I know.... I'm fighting it.

Let me explain what my experience is with radiation.  I've had numerous local recurrences.  I had it spread to skin one week from radiation. (As you see it did not work for me.) I also had surgery on my chest wall by a top bc surgeon.  He said that when he takes out bc in a radiated chest, that it is encased in a "spiderweb" like damaged tissue that keeps it from spreading.  Which is a good thing.  But this same damaged chest tissue keeps chemo from ever being delivery to this area again because of damaged blood cells.  

Is radiation keeping my particular cancer from spreading to organ or bone?  I'll never know.  But put it this way...I did not let them do rads of my other side.

Flalady

althea

Liz, if you have an inner voice guiding you toward alternative medicine, I'd recommend that you continue your search beyond a woman's story who lost her battle with cancer.  btw, I would not agree at all that her outcome and all the things she tried were a waste.  Knowing what doesn't work is often just as valuable as knowing what does. 

Here's what I don't understand -- if the mainstream professionals received the same level of skepticism that we give the altnerative crowd, would the mainstreamers be worthy of our trust?  The more I learn about natural healing, for me the answer is increasingly no.  Well, to be fair, I never have liked doctors. 

I used to think the way to be healthy was mind over matter and stay as far away from doctors as possible.  Clearly, my world view is flawed or I wouldn't have developed a tumor.  I went with mainstreamers because I didn't know what else to do.  Now that I've discovered a natural healer with information that makes sense to me, I'm improving my lifestyle.  It's a whole new view of how to be healthy, and I'm placing my trust in it.  I have more faith in natural methods to prevent another life threatening condition than I do my mainstreamers.  If you're interested, there are dozens of newsletters to read at www.herbdoc.com.  I went there at the suggestion of genesis, who hasn't posted lately.  I hope she's ok.  

GracieM2007

Liz,



Another question, kind of off topic, if you are still around. If you are a Cordon Bleu trained chef, wouldn't you KNOW what the properties of baking soda are and how it works? Don't they teach you that at a Cordon Bleu school?



Just wondering.



Gracie

rubytuesday

Stacey, Complementary medicine is a combination of conventional and alternative.  I included that in my post. I'm a bit of a 'hybrid' myself but also believe that the cancer industry needs revamped from the top to the bottom.  Like I said, if they had the answers, we wouldn't be here.   Best wishes

lisa39

If you google 'chemotherapy double blind tests' or 'radiation double blind tests,' you'll find lots.  Sorry, but how could you think it would become standard medical practice to inject cancer patients with toxic chemicals or zap them with radiation if adequate research to prove their efficacy did not exist?

FloridaLady

It's done all the time.  Chemo has to work in only 10% of the population to get approved.  Sorry!  But I have done trials and know how they work.  Also my local oncologist worked at the National Cancer Institute and said they could push any thing through! I did a trial where Germany knew 5 years early this chemo does not work on bc.  I got treated with it at MD Anderson #1 clinic. And I have horrible side effects to prove it.

Flalady

trigeek

I  truly believe in complementary/alternative medicine and I was mad at conventional medicine for profiting from this crap but did go with Dose Dense Chemo and am doing voluntary radiation now just because I wanted to throw the kitchen sink at it and I felt physically strong and believe that my body will be able to shake off the side effects.

Then I thought to myself at least they are trying to find something to fight this, of course they are going to profit from it how would they be paying the researchers that are supposed to be 'the best' ? We are living in a consumption economy like it or not, and the people are expecting monetary compensation after spending years in college/education.  This is realistic thinking.

I think they are trying their best, but the drug companies best is not good enough yet. My personal opinion is that if they save at least 10% of the gals thats better than 0%.

Do they want to harm us intentionally  ? No,

Do they know any better ? No. 

Would they love to have a treatment that does not have any side effects ? I think they would love to have that to charge us even more.

Is there any reason for them to hold back a cure that will help us ? I can not think of any.

Are there some ugly politics going on in the drug industry ? Can you tell me where this is NOT happening nowadays ?

Are they in the right direction ? Who knows ?

Unless the gov't decides to fully undertake the finances  of cancer research as a public service ( which IT SHOULD) this is the way it is now.  I do not see anyone else making an effort to find a cure.. the fingers should be pointed to the health system overall, not the ones who are profiting from the apparent gaps in the attitude towards health care.

For now I will use all the ammo from conventional and alternative and keep my fingers crossed and trust higher powers.

Aylin

FloridaLady

Sorry... 10% is not good enough for each drug that averages a billion dollars a years in sales.  And for very dollar of chemo there are billons more made from the cost of treating side effects.  By bill for 2 1/2 years is about million dollars.  Look up how many bc chemos work without a solid tumor. Answer O.  Why does everyone get chemo after surgery if you have clear margins?  How is the chemo going to fine the tumor?  BC chemos do not treat loose cancer cells in the blood.  Only in the last 2 to 3 years have they started doing chemo first, before surgery where the chemo has something to work on.

But they will not help with the cost of a organic diet and supplement if you want to treat naturally.  I figure I have at least a 10% chance to heal myself.

As someone who been in the system long enough and have a excellent relationship with my numerous doctors.  They now openly telling me if the cancer can not be cut out, that chemo is only used to slow cancer down IT IS NOT A CURE or even possible remission for most.  Chemo can only extend life a few years with quality of life damaged by year 2.

Do they want to hurt us? Some doctor's no. Mine are upfront even though I have only two very small places not in organ or bone.  But there are many who think we are happy in damaging treatment because we think we are doing something to help with are recovery. (I know I was.) Believe me, I have been told this when I ask point blank if treatment is going to help and for how long.  You will not like the answers you get.

The new wave of treatment is traditional treatment that "looks like" and "smells like" CAM but to someone who has educated themselves about natural healing will know it all smoke and mirrors.  The new gentle way to treat.....NOT.  Yes there are some wonderful doctors out there I have meet some of them and some really bad ones.  But they are doing what they were educated in.  Do I blame them...not totally, but they should at least try and educate themselves about the basic treatment of side effects naturally if nothing else.  If I doctor can't tell me even to change my diet while I'm sick, I would say they "do" want to hurt me.

Flalady

rubytuesday

Flalady, AMEN! .....and it brings to mind what hit me right between the eyes shortly after my first diagnosis.....'First, do no harm'.  After my second diagnosis when I was arguing with my surgeon over my lymphnodes, I asked her if ANY Drs. even take that oath anymore.....I think I struck a nerve.  I hope I gave her something to think about!!  Best wishes

zoey1

Hi,

I am a two year survivor only using vitamins and flaxseed; 3 tbs. ground flaxseed a day, Brevail, DIM, D3 and multivitamin. Haven't been sick (colds, flues) a day since I started which is very unusual for me as I work in a school.

lisa39

Well said, Trigeek!!  I agree with your points 100%.

FlaLady -- where did this notion that chemo only works in 10% of caner cases come from?   I have never seen that number in my research.  I live in Canada where chemo, radiation, Tamoxifen, Herceptin, etc are paid for by the government.  Just as it is in many European countries.  I find it hard to believe that universal health care systems would just be signing blank cheques for a treatment that only works 10% of the time.  Maybe you're talking about chemo only being 10% effective for cancer that is Stage IV?

Trying to understand....

FEB

It is great to be able to come here and see that there are others, like me, who believe that we can have a lot to do to get and keep ourselves, cancer free. Like Aylin, I like to integrate the traditional and holistic approach, but unfortunately, it seems, never the twain shall meet. So my regular docs are losing patiences with me because I will not dutifully follow their directions. They are wonderful women, and I really respect them, I just wish they were more supportive of holistic care. I guess they are too worried about lawsuits to go against the grain.

Anyway, I am due for my 6 mo. mammo next month and dreading it. I know they will take lots of extra pictures and I am sick of being radiated. Not to mention that I am sure it will be really painful on my still tender breast. So I am seriously thinking of THermography instead. My holistic doc swears by it. Has anyone done this? I talked to the doc who does it and he did a great job of answering all my questions.

FloridaLady

Lisa39

You need to read about new drug trials results.  You need to read on doctor site not patients.  Then you need to follow the ongoing study a few years later after people active used it.  They wait up to five years to reevaluate preformance of the drug. If you don't believe, ask how many people on the site at any Stage that had "active cancer" (per biopsy) and had chemo that actual kill cancer and had no additional treatment. NO surgery or rads on cancer site or recurrence site.  If you had cancer removed with clear margins how do you know if your chemo worked?  As for Staging I,II,III means it was possibly cut out. IV means it wasn't!  That why it is call remission and not cure.

Then I have my own experience with a drug trial. Sixty eight people took the drug I did with horrible side effects. (only 3 were bc  ladies) All of us had cancer that progressed in two months and the drug was approved for bc.  It did not go through Phase II and III.  Have you done a drug trial? Would any of you?  I found everyone talks big, but no one ones to be the lab rat!

But there is hope.  You can treat your bc with CAM and cover both sides.  You need to understand your cancer Receptor, Stage and your Grade and what it means about how aggressive you need to be. (Surgery can be your friend.) Most of all you need to educate your self on everything you can do to insure the best possible return to health better than before the Big C.  All I'm asking is be honest with the patients about their treatment. Don't pretty it up with a pink ribbon.  We need to know we have to be a big part of our battle.

Flalady

PS: ACT the usually first round of chemo for most, does work 30 to 40% of the time.  Again they don't know if surgery remove all the tumor????