I am looking for other women, like myself, who have metastatic breast cancer and been denied treatment by Dr. Stanislaw Burzynski and his lifesaving 20+ year old discovery called antineoplastins. Women have been singled out as a class of American citizens who are denied access to Dr. Burzynski’s treatment unless they have failed every possible conventional therapy on the books. I need help NOW! There are many women who know nothing about Dr. Burzynski because of WOMEN POLITICIANS like Donna Shalala who oversees The FDA and Jane Henney FDA Commissioner who allow the breast cancer slaughter to continue by withholding and denying access to lifesaving information like this. “United we stand…divided we fall” anyone have any ideas? Where are our constitutional rights? Have they all been overshadowed by this lucrative “American breast cancer economy” that we have created? What will be next in this “selective” system that denies US the " right to choose" the lifesaving treatments that are available to US,…JUST BECAUSE YOU ARE A WOMAN, IN THE UNITED STATES, WHO HAS BREAST CANCER!
WHO will be next…What about our daughters, our mothers, our sisters…WHAT ABOUT YOU!! What will be the next “class of people” who will support the “cancer economy”? IT COULD BE YOU! Are you willing to fight for a woman’s right to live? Let me hear your comments and stories today…time is wasting. Yes, I am passionate and my intentions are pure with “right action” as my only motivation.By the way, Dr Burzynski has a web page…just type in Burzynski. His antineoplastins have helped many people with many forms of cancer over the last 25 years.
Soooo… What’s the article link? Does this relate to any column I’m aware of?
If it isn’t categorizing might be hard, since it appears to be more of an appeal rather then a query.
Is this a MPSIMS or a general question?
I think the OP was in response to this column on risk factors for breast cancer: http://www.straightdope.com/columns/000303.html
Wow. That’s definitely a stretch.
But okay, I can see it.
So, the life-saving treatment they are being denied is avoiding anti-perspirants? 
FWIW: Well, I “just typed in” Burzynski. In the first 10 hits, I got 5 hits that led to “page not found”. Here are 4 of the others:
This purportedly leads to the Burzynski Research Institute Clinical Trials Home Page. http://www.cancermed.com/
So does this, evidently, but this “home page” has a banner ad saying “Free Computer”. http://www.1stglobalmall.com/burzynski_clinic/
The second “Burzynski” hit led to the Uropathy home page, which is enough to set MY alarm bells ringing. http://users.erols.com/martinlara/
Then there was this. You tell me. http://www.torimoreno.com/doctor/
And that was about it.
Pardon me, I have to go look up my constitutional rights. Gee, I wasn’t aware that the Founding Fathers gave me the right to seek any breast cancer treatment I chose. Must be one a’them LIBERTARIAN interpretations.
And where’s this “lucrative American breast cancer economy”? Hey, I’m not getting my fair share, whatever it is.
“Why, sometimes I’ve believed as many as six impossible things before breakfast!” - the White Queen
Ninth and Tenth Amendments. Unenumerated rights.
Amendment IX (1791)
The enumeration in the Constitution, of certain rights, shall not be construed to deny or disparage others retained by the people.
Amendment X (1791)
The powers not delegated to the United States by the Constitution, nor prohibited by it to the states, are reserved to the states respectively, or to the people.
Looking for a conspiracy is fun, but hardly fruitful. Look up the name of a little boy named Thomas Navarro. He doesn’t have breast cancer and isn’t a woman. His parents don’t want him to undergo conventional therapy and want to subject him to Burzynski due to the parents perceiving that it it less “toxic”. Burzynski’s deal with the FDA only allows him to take those that have little hope because of his, ehem…checkered past.
I see little reason to blame the FDA because Burzynski has released precious little data and the data that has been released has been roundly criticised as poor and some have even said that it is useless. Burzynski’s credentials are also questionable seeing that he came up with this “cure” without benefit of any oncology training. He claims a PhD in biochemistry (I believe), but at least one critic notes that the school Burzynski claims awarded it to him was not in the business of awarding Biochem PhD’s. I do not think it is a problem that a non-oncologist would come up with a cure, but his lack of experience coupled with a PhD that no one can confirm does raise a question when taken together.
I, personally, think that Burzynski is lucky that he has so many freinds in high places. Sens. Harkin and Hatch along with Burton and those from his home state have taken a liking to Alt.med and “the AMA conspiracy” and Burzynski specifically. The FDA was under tremendous congressional pressure to accomodate this guy after an ill-conceived federal prosecution went south. Unfortunately, my understanding is that the federal prosecutor agreed to not let scientific evidence be a part of the trial for fear of dueling experts causing confusion to the jurors.
This guy has about 1 or 2 hundred “clinical trials” currently registered. My question is how can one man with a clinical trial coordinator that was a former stockbroker be able to handle that many clinical trials under the roof of his cancer clinic. Most large pharmaceutical companies don’t have more than 4 or 5 trials going on at once because of the cost and the complexity of conducting proper trials. But I suppose you think Burzynski and the stockbroker can handle it without a problem, right? That’s why Burzynski takes in 20 mio a year, right?
I don’t think you are being screwed by women politicians, I think you are in the process of being snowed by a questionable character and the “cult” of followers that sing his praise. I think he could avoid a lot of the problems he has by simply releasing his data in a professionally acceptable manner. I don’t think it is too much to ask and you really have to wonder why Burzynski tries so hard to keep his data secret, even after this many years. Many oncologists are in agreement that the data he has released is useless for evaluating his claims. Why doesn’t he answer his critics with solid evidence? I’ll bet that he can’t.
Notthemama,
Looking over the Tori Moreno page makes me wonder if patients are actually getting the total story.
They describe her treatment as “gene therapy” and claim that it is “virtually totally non-toxic”. These are supposedly peptide fragments and are treated with alkali. Most patients suffer from sodium poisoning and a number of his patients have died from administration of his “medicine” this does not meet my definition of non-toxic. As for calling it gene therapy, I wonder if Dr. Stan is cashing in on a new snappy sounding science buzz-word.
Jon
JillGat, I disagree. The connection to that column is tenuous at best. It looks more like a blanket (alarmist) appeal for attention. It is borderline spam. I think it should be GQ or MPSIMS. Or even GD.
Jo Ann Esterly said:
Let’s look at this claim.
The American Cancer Society had this to say:
antineoplastins
Health Care Reality Check had this to say about Dr. Bruzynski and his treatment:
http://www.hcrc.org/contrib/green/burznew.html
and
[My apologies if the quotes are too long. I felt the detail was needed.]
So according to these sites, what we have here is an ineffective treatment that is not what it is purported to be being promoted by a guy who exaggerates his credentials. Nevertheless, because of pressure from cancer patients, the FDA has finally granted permission for Dr. Burzynski to conduct clinical trials of his treatment.
Clearly it is not a case of singling out women. The treatment is experimental, and thus reserved for experimental trials. Also, Dr. Burzynski’s site mentions it’s effectiveness is against brain tumors and non-Hodgkin’s lymphoma, not necessarily breast cancer.
Quackwatch has an article on the dangers of alternative treatments.
How Quackery Harms
[Note: This message has been edited by JillGat]
I don’t know why, but this particular piece of pulpit-pounding got right in amongst me. It’s one thing for people to try to spread the word about a new cancer treatment, but when those people use a lot of rhetorical questions like, “Where are our constitutional rights?” and “What will be next?”, and if they start talking about the terrible danger to our wives, sisters, and daughters, and THEN if they also start hollering that the gummint is suppressing information, well, it just makes my lil’ foxy ears prick up, that’s all.
And when those people use the SDMB to spread the gospel, well–sorry, Jill, I know it’s a free country, but really… :rolleyes:
originally posted by Jo Ann Esterly
I am looking for other women – fact
like myself, who have metastatic breast cancer – not proven that poster has metastatic breast cancer; not proven that poster is even a woman
and been denied treatment – not proven that poster has been denied treatment
by Dr. Stanislaw Burzynski and his lifesaving 20+ year old discovery called antineoplastins. – not proven that his discovery is lifesaving; not established what antineoplastins are, or that Dr. Stanislaw Burzynski discovered them
Women have been singled out as a class of American citizens – not proven
who are denied access to Dr. Burzynski’s treatment – not proven
unless they have failed every possible conventional therapy on the books. – not proven
I need help NOW! – not proven
There are many women who know nothing about Dr. Burzynski – fact
because of WOMEN POLITICIANS like Donna Shalala who oversees The FDA and Jane Henney FDA Commissioner – not proven that women don’t know about Dr. Burzynski because of these two female politicians
who allow the breast cancer slaughter to continue – not proven that they are “allowing a breast cancer slaughter to continue”; not proven that there is in fact a “breast cancer slaughter”
by withholding and denying access to lifesaving information like this. – not proven that the information is indeed lifesaving; not proven that Donna Shalala and Jane Henney are withholding said information
“United we stand…divided we fall” – empty rhetoric
anyone have any ideas? – legitimate question
Where are our constitutional rights? – rhetorical question
Have they all been overshadowed by this lucrative “American breast cancer economy” that we have created? – not proven that there is such a thing as an “American breast cancer economy”; not proven that whatever it is, it’s lucrative; otherwise, rhetorical question
What will be next – rhetorical question
in this “selective” system – not proven that the system is in fact “selective”
that denies US the " right to choose" – not proven that the system denies the right to choose
the lifesaving treatments that are available to US, – not proven that the treatments are in fact “lifesaving”
…JUST BECAUSE YOU ARE A WOMAN, IN THE UNITED STATES, WHO HAS BREAST CANCER! – empty rhetoric
WHO will be next… – rhetorical question
What about our daughters, our mothers, our sisters – rhetorical question
…WHAT ABOUT YOU!! – rhetorical question
What will be the next “class of people” who will support the “cancer economy”? – rhetorical question; not proven there is a “cancer economy”
IT COULD BE YOU! – empty rhetoric
Are you willing to fight for a woman’s right to live? – rhetorical question
Let me hear your comments and stories today…-- reasonable request
time is wasting. – statement of opinion
Yes, I am passionate – fact
and my intentions are pure – not proven; poster could be anybody with an axe to grind
with “right action” as my only motivation. – false; see first sentence of OP, “I am looking for other women, like myself, who have metastatic breast cancer…”; poster’s purpose seems to be to drum up support for a personal crusade;
By the way, Dr Burzynski has a web page. – *in fact, he seems to have two *
just type in Burzynski. – fact
His antineoplastins – not proven that they are “his”
have helped many people with many forms of cancer over the last 25 years. – not proven
If I counted right, that makes 22 statements that are “not proven”, 2 things that are “not established”, 10 rhetorical statements or questions, 5 facts, one legitimate question, one reasonable request, one statement of opinion, and one falsehood.
The “facts”: I am looking for other women
There are many women who know nothing about Dr. Burzynski
Yes, I am passionate
By the way, Dr Burzynski has a web page
just type in Burzynski
The legitimate question: anyone have any ideas?
The reasonable request: Let me hear your comments and stories today
The statement of opinion: time is wasting
The falsehood: with “right action” as my only motivation
Everything else in this post is, in my HUMBLE opinion, hooey. *Jo Ann Esterley, I am truly sorry if you indeed have breast cancer, and I am even sorrier that you evidently are having trouble getting the treatment you desire.
If, that is, this is a legit post and not just spam.
“Why, sometimes I’ve believed as many as six impossible things before breakfast!” - the White Queen
Sheesh. Tough crowd. The poor lady has a terminal disease and is distraught with despair (I’m surprised someone didn’t break out the “T” word) and we pick apart her post and slam her.
Just a suggestion here:
The next time that someone with a fatal condition chooses to vent here in our precious little message board let’s ignore it if we don’t have anything nice or supportive to say…M’kay?
I’m embarrassed for us all.
Jo Ann,
If you need someone to talk to or just need to vent feel free to email me at: contestant_3@hotmail.com
My wife is currently battling breast cancer as well…
Jo Ann,
Krispy is right, the responses to date are lacking in compassion, and abundantly skeptical. The compassion does exist on the board, and you may hear from some people with a bit more to offer in person. The skepticism is strong here too. While your personal emotional starting place might not make that message easy to hear, you should listen to it anyway.
Doctors who offer dramatically effective new therapies for previously intransigent diseases are not rare. Doctors who actually provide curative medicine for cancer are rare indeed. Shark cartilage, almond pits, protein free diets, magnets, and solutions of active ingredients so dilute that detection is impossible have been touted for generations as dramatic cures. The people who need them most desperately are the most likely to believe. But the truth does not respond to desire, it simply is.
What possible reason would women politicians have to condemn women to die of breast cancer? The bureaucrat who happens to be the head of the Health department in the year that cancer gets cured is likely to reap big political rewards. There is not plausible motive for the conspiracy you allude to. What possible benefit could your Miracle Doctor get out of faking a cure for breast cancer? Millions of dollars.
There are dogmatists in the AMA, and there are lots of reasons to doubt that Doctors know all the answers. But there are more knaves than White Knights in the world, and your hopes are better supported by good science, and careful testing protocols than wishful thinking and risky treatments.
People live through breast cancer. Some also die of it. Life is a matter of living, and dying. Look to the living, now, and not to false hopes. Let those around you love you now. Seek what treatment you can find, and live as you can.
God bless you.
** Tris **
Imagine my signature begins five spaces to the right of center.
I went through the whole realm while taking care of my mom who died of breast cancer. It was ugly, hurtful, painful, debilitating and at times very degrading for her.
Do any of you really know what you are talking about? I’m with you Krispy, I’m embarassed that this woman has received the responses she has. Get a grip people, she wasnt looking to be ripped apart.
Give your children these two things: One is roots, the other, wings - Wally Wally He’s our Man
I am not unsympathetic, Krispy and CanadianSue, OK? If my mother had breast cancer, I might be rummaging around desperately looking for answers on the Internet, too.
However, in defense of the skeptics in this thread, I would like to point out a couple of things.
One is that, again, that we have no way of knowing that the poster is (a) a serious person, (b) a woman, or © a woman with breast cancer.
Do you think Mr. Socko is really “Stud of the Year”? The whole point of a MB is anonymity; just because the poster uses a real name such as Jo Ann doesn’t guarantee it’s a real person with a real problem.
The SDMB has been spammed many times; all of these posters also use real names, like Anastasia (which was the most recent–if you weren’t up early enough, you would have missed it.)
People with axes to grind and chips on their shoulders go driving around on the Internet, looking for places where they can deposit their scare-mail, like a cuckoo laying an egg in another bird’s nest. Needless to say, they never come back to see how the egg hatched out.
The SDMB is also frequently the recipient of sincere posts from passionate people with axes to grind, viz. and to wit, the other homeopathy thread in Comments started by a doctor of homeopathy. If a person reading the thread only reads the OP, he will come away convinced that “homeopathy is being unfairly persecuted”. We, the skeptics of the SDMB, feel obligated to respond, to point out the flaws in the OP.
Brisk debate is what the SDMB is all about.
Finally, although I know it’s unrealistic to expect a dying cancer patient surfing the Internet to take the time to get to know the SDMB before she decides where to post her message, I would like to point out that General Questions, generally speaking, is the place to go for “does anybody out there have X?” type of questions. She would almost certainly have received a much more sympathetic, less skeptical response there.
Although her post is (sort of) connected to Cecil’s column on breast cancer and anti-perspirants, unfortunately this particular forum is perhaps the one SDMB forum that is the most dedicated to fighting ignorance, to exposing quack medical treatments, and just generally to skepticism in general.
“Why, sometimes I’ve believed as many as six impossible things before breakfast!” - the White Queen
Well I guess after I give this some consideration I’ll decide as to whether you are a)a serious person b)a person who knows what they are talking about c) just being critical.
I tend to lean towards always giving people the benefit of the doubt until shown otherwise.
Comparing the OP with Mr. Socko is ridiculous at best.
My post was simply an observation and opinion.
Give your children these two things: One is roots, the other, wings - Wally Wally He’s our Man
I agree that we should be sensitive when someone has a terrible disease and is having to make difficult choices about treatments. I don’t think our job is to give advice if we aren’t knowledgable, or to give false hope if we find evidence that a particular treatment is without efficacy. There are quack practitioners who get rich off the desperation of those facing possibly terminal conditions. There are also treatments out there that offer hope but are not proven or are still being studied, and often are not available to all who might possibly benefit from them. This can be really frustrating for the person who’s suffering and feels they’re racing against the clock.
CanadianSue, kindly and thoughtfully I will save you having to consider your three points by answering them for you now, in what I sincerely hope comes over the server as a non-confrontational, non-sarcastic, albeit somewhat exasperated, overall positive force for good:
::: takes a deep breath :::
[list=1][li]Yes, I am a serious person. You don’t need to take my word for it; you can go read some of my other posts, in Great Debates and (yes) the Pit. Are those the posts of a shoot-from-the-hip, “doesn’t know his behind from a hole in the ground” person. I honestly don’t think so.[/li][li]Yes, I am a person who knows what he is talking about. Just because I have never had breast cancer myself, nor have I watched a family member suffer through it, doesn’t mean I am not qualified to talk about the subject of breast cancer.[/li][li]Yes, indeedy, sweetie, I surely was being critical. And I meant to be. Part of the reason that I at least am here at the SDMB, is precisely because we are allowed, nay, ENCOURAGED to be critical, in the sense of examining things that purport to be “facts” with a critical and discerning eye. I find this approach to life to be very refreshing, especially in a world that is increasingly swamped with scare-mail and Internet-conveyed Urban Legends.[/list=1][/li]
When I meet someone at church or on the street, and she tells me that she has breast cancer, I do give her the benefit of the doubt, and I believe her. After all, why would someone lie about something as horrible as that, unless it was a truly neurotic bid for sympathy.
However, in the Internet era, I think we all need to be just a tiny bit more suspicious, a bit LESS inclined to give the anonymous e-mail addresses we meet on the web the “benefit of the doubt”.
The doctor who started the second Homeopathy thread signed his name at the bottom of his post, knowing that it would be relatively simple for anyone who disagreed with him to contact him and see if he really existed. He had nothing to hide. Now, I don’t know whether anyone has actually done that yet, and it isn’t important. It does show a basic honesty, that he was ready to have an honest discussion about homeopathy, stand up for his viewpoint, rather than simply dropping a post onto a message board.
It is my observation that we DO give people the benefit of the doubt here at the SDMB. Look how long some of the trolls hang around before they’re ejected. They’re given plenty of opportunity to quit screwing around and shape up.
I’m sorry that you didn’t seem to take my point about Mr. Socko. My point was not, “Jo Ann Esterly is the same as Mr. Socko, because neither of them puts their names and addresses on their posts.”
Neither was it my point to compare the quality of output between “Jo Ann Esterly” and “Mr. Socko”. I agree, there is no comparison.
My point was, “Anybody can register for the SDMB and put any name at all that they want in the little box. You can put ‘Jo Ann Esterly’, you can put ‘Mr. Socko’, you can put ‘GeorgeWBushJr’. It doesn’t mean that your name really IS Jo Ann Esterly, or Mr. Socko, or George W. Bush, Jr.”
I’m sorry if you’re upset by all this. 
“Why, sometimes I’ve believed as many as six impossible things before breakfast!” - the White Queen
Well I reluctantly have to side with Notthemama on this one. The OP raised all sorts of red flags to me…lots of all caps, claims of a “cancer economy” (huh?), claims of a conspiracy against women, etc.
Please understand I’m very sympathetic to cancer patients – my husband is a cancer survivor (luckily his cancer was detected early enough that it was cured by surgery alone). I’m just not sympathetic to proponents of “alternative medicine” who use scare tactics, hyperbole and claims of conspiracy by the evil medical establishment to bolster their case. Call me skeptical, I don’t mind.
“The analyst went barking up the wrong tree, of course. I never should have mentioned unicorns to a Freudian.” – Dottie (“Jumpers” by Tom Stoppard)
Krispy Original said:
CanadianSue said:
Welcome to the SDMB - where wild assertions won’t go unchallenged.
I disagree CanadianSue - she did not come here looking for sympathy or help, she came to grind her axe. She did not say, “Hi, I have cancer and am looking for advice/sympathy/information. What can you tell me about antineoplastins/treatment options? I would like to hear stories from other breast cancer victims and their families.” She launched a tirade that the women politicians running the FDA are betraying their gender and leading a crusade to bury a poor, downtrodden doctor with a miracle cure because it isn’t a big pharmaceutical company that has the formula. It’s an accusation that women are being singled out vs anyone else out there with any type of cancer. It’s a blatant cry of sexism that is totally unsupported.
No, I didn’t call her a troll. But it does read like spam - and if I upset you by saying that, too bad, I call it like I see it.
I’m not unsympathetic. My uncle had colon cancer, treated by chemotherapy - he’s recovered. One of my aunts died of pancreatic cancer - by the time it was diagnosed she was a goner. If you check my posts all over this board, you’ll see I strive to be a voice of reason, compassion, and caring. On more than one occasion I’ve stepped in to call someone off from jumping to conclusions about a new poster, I’ve offered sympathy and advice to many people.
In my judgment, this post was not a request for help - it was a tirade. Notthemama may have come on a little strong doubting everything said, but I agree with the essence of his (?) post. There were many wild, unsupported assertions. That’s not something we generally let fly around here, is it? What makes this case special that she can get away with crap we don’t let anyone else get by with? Because she has cancer?
Note my previous response: I took issue with the accusations, and I looked up information about them. I did not attack Jo Ann as a person, or belittle her condition.
However, I will reiterate to Jill my conviction that this is NOT a response to a Cecil’s column, and it belongs in GQ, MPSIMS, or GD. Or maybe the PIT - **Tirade against the FDA, women politicians, and the “American Breast Cancer Economy”. **
Sincerely,
Irishman