Posted on: Nov 29, 2011 05:10PM
I actually saw Burzynski The Movie: Cancer is Serious Business. I know it's been discussed in other threads, but I'd love to discuss it with other like-minded people who may have seen it. I read this review, and have to say I completely agree with the author. Of course, I nearly always agree with the evidence-based stuff I read there, LOL!
Posts 31 - 60 (245 total)
Dec 1, 2011 12:24AM pickle wrote:
Why do so many people question science/fact based medicine? Yes the fact is there is no "cure" but to date the conventional treatments available are the best we have. Complimentary is a nice addition but complimentary alone or choosing alternative alone is playing with fire. Both the short and long term side effects of treatment suck and complimentary can help east that to some degree. it's frustrating and disappointing that we still don't have a permanent cure but it's an extremely complicated disease. We all have a different chcemical make-up (DNA) and we don't know why some people fare better than others, but I personally believe it's due to our iinternal chemical make up and I don't mean our alkaline... blah blah blah.
Some people get BC, some get recurrance and some don't for no apparent reason. I have seen and read about all varying lifestyles on these boards and I always think about one lady in particular, although there are many. It was Heidi Ho. Fit as a fiddle, non smoker, runner, healthy eater and bam...she gets BC. So many women here have lead good lifestyles and still get this crappy disease.
Some do well with treatment and some don't...it's a crapshoot. Eating well, exercising, keeping stress at a minmum has always been best for our overall well being but it doesn't prevent or cure this disease.
Where are the factual studies that alternative works? And for goodness sake don't even get me started on the wingnuts like Suzanne Sommers, Burzynski etc. I guess whether you are a modern day snakeoil salesman or a ditzy thigh master queen, you don't need to back up your stories with facts, you just have to have some desperate customers that will buy your BS. It is so sad.
Of course, at the end of the day, I hope that whatever path someone chooses, it works but when making life saving decisions, one must remove their rose colored glasses and seek out facts not grasp at straws for a bit of hope that has no basis and costs a lot of out of pocket dollars.
Dec 1, 2011 12:30AM scuttlers wrote:
Oh my, can you post her Caring Bridge link please.
There is a HUGE difference from Stage 0 and Stage 1 to the aggressive metastatic Stages. And the government is NOT paying for my treatments. I am paying close to 35% of my income to keep my private insurance. And I know that the insurance company is NOT going broke paying for my treatments. There are CEO's, CFO's and others who take home more in a week than my treatments will cost.
The "MIC" would set my possible survival (Stage, type of BC, and spread at diagnosis) at about 18 months. With aggressive treatments, I am happy to be living a very fulfilling and happy lifestyle at 35 months past diagnosis. So I have been able, at this point to DOUBLE my life span with treatments. Worth it? Ask my grand children. Ask my husband. Shoot, ask my cat.
Have you even looked at the FACTS in the links on this discussion?
Dec 3, 2011 09:25PM - edited Dec 4, 2011 01:24AM by Moderators
thenewme and the rest of your transparent cheering section, are very clear in displaying your limited understanding of complementary medicine. You pick the most ridiculous examples of non medical therapy and take aim, but you keep missing the target. No one, unless they are very naive, should put stock in such meaningless therapies as a sole treatment protocol. You are telling us nothing, but revealing everything.
Well, then what do you have to say to someone like me? I do not dismiss conventional medicine and surgery, on the contrary, I believe in a complementary approach. Build up and support your health in a evidence based modality which makes chemo and or any therapy WORK BETTER if that is your choice. But what do you have to say about evidence based CAM interventions that are backed by citation? What do you have to say about the corruption of the peer review process which has seen major studies now invalidated as the data on which they were based was falsified, thus throwing tens of thousands of studies on which they were based into complete upheaval? What do you have to say about, what I feel amounts to, the criminal behavior on the part of so many oncologists who dismiss the value of raising D3 levels or of using curcumin when it has been shown in study after study to make chemo and radiation work better? What do you have to say about the extremely troubling issue of Pharma's influence on the peer review process as detailed by Marcia Angell, the editor of The New England Journal of Medicine?
I was diagnosed with triple negative bc with an initial ki67 of 90%. On the surface, the first pathologist, a well respected doctor at a major university hospital, was so startled at the aggressive nature and histopathology of my biopsy slides that she called the surgeon personally and immediately after concluding my case. The tumor board at a major hospital absolutely concluded that I would recur and die without aggressive chemo. I consulted wtih 8 oncologists, two of them world famous clinical researchers, including a MD Anderson specialist in tnbc. I was lucky because I had access to the best medicine, both allopathic and complementary that money could buy. I had to avoid chemo because I had secondary health issues which could crisis to horrible if not fatal complications with chemo concurrently. One of the oncologists I consulted with was my brother; we looked at the biopsy slides together because he had the equipment to do this. The nature and biochemistry of those cells was very frightening. Yet, I did not choose to do chemo or rads, and with my brother's full support.
As an undergraduate and post grad student, I worked in medical research, I know how it works, how it is funded and how to read the raw data and peer review literature. I worked with doctors who were doing what they claimed and believed was ground breaking research in cancer DNA clinical research and I saw how they were getting NOWHERE, while they collected millions of dollars in grants; I took some of the calls of their patients who were calling in desperate pain and were being mismanaged because their doctors were too busy working on their patents than in being available clinically. The blogs and slams you post do not tell me anything--they are a manipulated and twisted commentary with a pre-ordained agenda to promote and pursue this same model of medicine that has let so many people down.
Ask yourself the real question: Why do you think so many people are looking to these outlandish therapies? Why do they reject mainstream cut, burn, and poison? Because the death rates are unaltered after over 30 years of this protocol; the bell curves are changed, but the final endpoint remains the same. I do not dismiss therapies like chemo and radiation and medicines which are available to us in this age. I do not support the extreme approaches of uninformed non medically trained "healers" who tell people to avoid even surgery to remove exciseable masses. But I do object to the demonizing of integrative and alternative modalities that show promise but are a threat to the standard bearers bottom line. We cannot allow this for it puts us all at risk.
I did not end up doing chemo or rads. I did do surgery. Anyone who is able to excise a tumor but doesn't do so, like Steve Jobs famously did, for example, is simply foolish. But I did do a supplemental protocol and lifestyle changes. I am NED at almost three years post dx. In fact, I have terrific health, better than before I had cancer.
I have seen the Burzynski documentary. Not because I am interested in his therapy, but because my friend's daughter, diagnosed with rhabdomyosarcoma, after failing all chemo modalities, is one of his patients. She is well. These are not people who took this road easily. They were in a race to save her life. They are people of means, the mother a well known designer. They could have gone anywhere in the world, but were referred to Burzynski by the parents of another child with this cancer, who was also doing well after Burzynski's therapy.
Dec 3, 2011 10:36PM - edited Dec 3, 2011 10:37PM by Hindsfeet
I met someone this summer who was fundraising for a friends 12 year old daughter who had advance brain cancer...the girl was being treat at Burzynski clinic. I asked how she was doing. They said she dramatically improved after the first treatments. The girls family tried first conventioal medicine.
I don't know how anyone can watch the Burzynski documentary without being deeply touched. Everything in the documentary was publically documented, and under a FDA approval...trial study. The testimonies in the court cases are also documented. Personally, I don't think people who haven't seen the whole documentary has the right to criticize it. Who would critique a book they haven't read, or a movie they haven't seen?
I wonder why people find fault without someone who is trying to cooperate with FDA and helping people?
Dec 3, 2011 11:06PM impositive wrote:
Eve, that's an interesting story and one I've heard several times about this clinic.
There was a man at the clinic where I am currently receiving (alternative) treatment. He had prostate cancer. When he came to the clinic, he was in a wheelchair and on dialysis because his tumor was so large. After 3 weeks of treatment, he was off dialysis and walked in and out of the clinic daily for his treatments. I personally witnessed this transformation and spoke with him, his daughter and her husband who traveled there with him. He was in his 70s and ran marathons before he was diagnosed. He was leaving the clinic after 3 weeks to continue his treatment at home as I have, so I wont know his ultimate outcome but you only have to visit a place like that and hear the patients stories to know that there is hope beyond the "golden" standard of care.
When asked, "Where's the proof?" I have seen it and I have felt it in my own body. Proof lies in both camps... for and against. I choose the empirical evidence. I have seen it, I have verified it and I am repeating it. I can only hope that it works as well for me as it has others I have met, just as the rest of you can only hope that your conventional treatments work for you.
Dec 4, 2011 01:39AM MsBliss wrote:
PS to my previous post
This is most troubling----I don't know how they did it, but someone managed to remove the last portions of my post....
Dec 4, 2011 01:53AM MsBliss wrote:
Oh, I see--the "Moderators" chose to edit it out. I wonder if the "Moderators" would be so kind as to tell me why they chose to edit my post. What was removed was a rhetorical but direct question to thenewme which was, a question of motivation. It is more than curious that without a direct response from thenewme and within minutes of my posting that the "Moderators" chose to intercede and erase my suggestion that perhaps thenewme is involved in the very model we are hoping to discuss here. I question the financial and/or ethical ties of thenewme, of the "Moderators" and what type of relationship actually exists here.
Dec 4, 2011 12:18PM rosemary-b wrote:
I applaud the moderators for the job they do so well. Passions are high on both sides of this debate and instead of deleting a post that some might see as inflamatory, they edited it Remember this is the complimentary forum, a place where alternative treatments are met with more scepticism than the alternative one.
This is supposed to be a place wher women who have chosen traditional western medicine can learn about things to compliment that therapy, not a place to bash evidence based medicine.
Dec 4, 2011 12:32PM - edited Dec 4, 2011 12:34PM by KatyDee
It is also not a place to bash those sisters who hold Alternative views. Yet that is what has been allowed to happen over the past months. It is not enough that the Alt ladies have been driven out of this forum for the most part, but now their posts are edited if the moderator does not like what is being said. I read ms Bliss post pre moderator edit, and there was no personal attack, unlike those of black-cat's and others whose personal attacks ate NOT edited by the moderator. One has to wonder why. Black - cat posts almost exclusive attacks on alternative topics and nothing else. Her last attacks on Impostive in this forum are beyond the pale. Will the moderator edit her nasty ad Hominem comments against Impositive? Yet ms bliss Politely raises the question of Thenewme's possible affiliations and connections and the moderator edits that out? Disgraceful!
Dec 4, 2011 02:50PM motheroffoursons wrote:
I just want to say that I appreciate thenewme's scientific approach. Just because it is not conventional treatments does not mean that we have to ignore science and data. She gets picked on a lot for requiring rigorous thought and analysis where some others just spout something from a blog that is not true scientifically. Keep it up thenewme.
Dec 4, 2011 06:05PM MsBliss wrote:
First I want to say that I am grateful for BCO. More than that, I am deeply grateful that BCO has provided forum space for Alternative and for Complementary discussions. Without the free exchange of ideas in that regard I would not have been able to cobble together a comprehensive protocol, which I believe, kept my health optimal through this entire process; I would not have been able to share this information with my bc sisters; I would not have been able to meet all of you wonderful, brilliant women. You are all, including the Mods, thenewme, all of you, my heros. We need the skeptics, we need to challenge our ideas, we need to question everything. You are right motheroffoursons, we also need to pay attention to the hard science and data (it is my milieu). It makes us stronger. So thank you.
Back to the little matter at hand. Now that AnnNYC has insisted that I "asserted" an incorrect conclusion, it begs a response. Let's see if that is true. I maintain it is not. I maintain that I only asked a question which has been queried before regarding a long simmering issue with regard to thenewme and, that absent an honest and definitive answer, it is censorship and nothing but, to have edited out that portion of my post. I was not attacking, insulting, or selling anything; I was asking a question, not so subtlely. I need to see how my words comprised a true violation of forum rules. So, Mods, might you re-instate the edited portions with a caveat that explains how my example is not acceptable? Might I and perhaps the rest of us, be allowed to at least learn from this somewhat fuzzy standard? The Mods appeared instantly defensive about my question, an implication, and so out it goes. If I was wrong, be specific and tell me so. This "invisible master" with a sledge hammer approach cannot be viewed as a reasonable response.
Further to that, to have had my post so quickly censored begs the question of exactly who are the Mods and whether they are posting, bobbing and weaving, and running roughshod over the free expression of ideas here. I wonder if opinions are in danger, and what's worst, are unpopular opinions in danger here? If an opinion is unpopular, it is even more important that it see the light of day. If an opinion or question is just wrong, then to quote Claudius: "Let all the poisons that lurk in the mud, hatch out".
We will be better for it.
It appears like ruthless behavior to edit and cut a post because it raised a hair on the head of the wrong person. Such an editorial attitude will be such a dark cloud over an open and thriving place like this. Do I need to get defensive as well? I will not make that mistake again. From now on, I feel forced with regard to all of my posts, to keep a record of them unaltered and then if they are altered, to keep track of such events; to post on another site, what is originally written and what is removed and let the public be the judge. I feel I must do this to enforce the true intentions of the forum rules and bylaws, not so they can be used haphazardly in the quest to keep someone's throne. It will be my task to forward this information to the sponsors of this wonderful website, because, as I said, we cannot be afraid of ideas.
We have long term forum members that are fearful to speak their minds, to ask difficult questions, to seek "unpopular or unproven" therapies, and answers. They have been "run off" this forum. Let me remind you all of something: We are here because we have cancer. We seek a cure, we seek a return to health. Why are we picking on each other then? When you ridgedly stand in the "I am right, they are wrong" corner, you are also denying yourself access to some little tidbit that might make your full recovery complete and robust.
I don't believe in a "cure all". That is not the nature of disease, but a little here, a little there, may make all the difference in the world. Look at the researchers at The City of Hope for whom it took literally years and piles of jeering to get their work on blueberries and breast cancer, particularly triple negative breast cancer, off the ground. The silly molecule we dismiss could turn out to be a magnificent therapy. Here's some hard science and data to grapple with: Researchers at the University of Baltimore, Maryland, have shown by radio tagged electron microscopy that some bc chemo drugs (I will not name them), while they reduce tumors may be actually increasing the risk of metastasis by creating more microtentacles on the surfaces of circulating tumor cells. They have been strangely quiet about it now. Not sure what this means but it begs some sort of open followup. Maybe such work offended someone, somewhere and we will never benefit from the information or the question. Sound familiar?
Finally, and not to pound a subject into a mash, let's not forget that two pharmaceutical firms are working on developing the sister molecules to Burzynski's "antineoplastons" (is that the correct term?), and they are not doing it to make themselves poorer; maybe, just maybe, they see something of promise. Let's tread lightly.
Dec 4, 2011 06:28PM Wabbit wrote:
MsBliss ... Oh good grief. There are rules on this board and making unfounded accusations against other board members most likely violates them. I didn't see your post but by your own account you are accusing thenewme of 'something' not very nice ... or ethical ... or something.
The Mods are hired by the owners of BCO. Since this is a privately owned board they get to make and enforce the rules as they see fit. We may not always agree but we are being provided this service for free so ...
I'm sure the Mods would explain exactly what your violation was if you sent them a PM and asked them.
Dec 4, 2011 06:43PM - edited Dec 4, 2011 06:50PM by 1Athena1
Katydee, I have no idea who removed Althea's post or what that post said beause I missed it.
....but I am one "coward" who has just reported your post. Making mention of baseless accusations aimed at tarnishing another poster's reputation violates the rules, IMO. It's defamatory. bAt this stage, repeating it is defamatory. It's gone on too long.
Dec 4, 2011 06:50PM - edited Dec 4, 2011 07:08PM by MsBliss
Hi WhiteRabbit, I wonder how do you reach the Mods? I tried to write to them when this edit first occurred but could not find a link, so I posted on the forum.
I believe you are mistaken. Since you did not see my original post, I will clear that up for you. I did not accuse thenewme of anything. You misquote me. Where did you ever see me write in my posts that I stated "by my own account" that I accused thenewme of "something not nice". I simply asked a question and insisted that until this point is clarified I would for now have to dismiss thenewme's comments because up until that point, I had validated some of the issues thenewme had brokered.
Let me also remind you that although BCO is a private forum, it solicits and accepts public donations and under such auspices it still has to abide by certain standards in dealing with the public. I don't have a problem with their rules and bylaws, I accept them completely and feel they are absolutely necessary.
With that being said, it begs the a lingering question: are any moderators posting under different user names without identifying themselves as BCO Mods? Observations are very telling and it is something that needs to be addressed. I am not alone in my concerns.
Dec 4, 2011 06:59PM althea wrote:
MsBliss, and I also, asked thenewme if she works for big pharma. This section has become a ghost town. To repeat more of what was in my deleted post -- a holistic approach to health includes creating harmonious relationships. This forum has become the antithesis of what it once was.
Dec 4, 2011 07:01PM KatyDee wrote:
Athena. Fine. And I have reported your post for reporting mine. See how ridiculous this is?
Inquiring about someone's personal and/or professional ties in relation to their postings is not defamatory. And it is "tarnishing" to one's reputation ONLY if one is being dishonest about it.
Dec 4, 2011 07:02PM Alpal wrote:
You finally drew me into this conversation. MsBliss, you are asking us to believe that you have access to "secret" research which names several cancer drugs which may increase the risk of metastasis. You know which drugs, but you're not willing to share this information with this board of breast cancer patients. And, you're asking us to be suspicious of thenewme??
Dec 4, 2011 07:03PM AnnNYC wrote:
MsBliss -- to contact the Moderators, you can find a post from them, click on their membername (Moderators), and then click "send private message" on the upper right of their profile page, just like you would any member. If a comment by them isn't handy, you can click on "Search" (upper right of this page) and enter the membername Moderators in the membername box.
Is this the research you were referring to?
Very interesting, and very scary.
Dec 4, 2011 07:06PM - edited Dec 4, 2011 08:13PM by 1Athena1
Ah - I see Katydee. No comment.
Dec 4, 2011 07:14PM MsBliss wrote:
I did not say I had access to "secret" research. I was quite open about where the research is taking place. You are projecting your ideas onto my post. It is quite public information and I did not list the drugs because I did not want to upset anyone by listing the drugs. Do you want to know the name of the researcher and the drugs involved? Just ask me.