the (other) cure

In my effort to be a well-informed patient, I (and my sister) decided to watch the documentary Burzynski, about a doctor who apparently cures cancer. I have received lots and lots of emails about this particular alternative cure, so I thought I might as well see what all the fuss is about before I lumped Dr. Burzynski and his cure (antineoplastons) in with all the other alt cures that I don’t believe will cure me.

After seeing the documentary and doing a little supplementary reading on the Internet, I am now more confused than I was before and I don’t quite know what to think about the cure or where to lump it. Part of this is because the documentary doesn’t offer specifics about antineoplastons, how they exactly work, or what treatment with them entails–just that it  does work, with no side effects. Yes, it unequivocally says so at the very beginning, “This is the story of a medical doctor and Ph.D. biochemist who has discovered the genetic mechanism that can cure most human cancers. The opening 30 minutes of this film is designed to thoroughly establish this fact–so the viewer can fully appreciate the events that follow it.” This was what I was really interested in going in, whether or not the treatment works, so seeing that the documentary assumed it does work, I was ready to turn it off right there. But for some reason, I was compelled to watch the next 107 minutes. Which focused almost entirely on all the politics surrounding Burzynski’s clinic in Houston, Texas.

I heard all the conspiracy theories in the movie involving the FDA and the U.S. Patent Office and the National Cancer Institute and the Texas Medical Board and the pharmaceutical companies. Most of the documentary focuses on court filings and letters from 15 years ago when everyone was apparently trying to put Burzynski out of business.

My biggest source of confusion still is, if his treatment is so effective, why isn’t everyone using it? Why is it just this one doctor who charges, at least according to The Guardian, about $30,000 or more so to start? Yes, there are the conspiracy theories, but still, if this cure is as effective as it sounds in the documentary, one would think that it, at some point, it would cease being alternative and start being conventional. This treatment has, after all, been around for over 30 years. Oncologists aren’t only out there to make money like everyone else is (according, again, to the documentary). If this worked–and even if the FDA was too corrupt to approve it–more doctors would recommend it.  I’m on a treatment that isn’t approved by the FDA for neuroendocrine cancer use, but my oncologist still recommended it because he’s up on the literature and he thought it would work. I have said this before and i’ll say it again, I believe that if my doctor knew of a cure, he would tell me about it.

There are a lot of stories in the film, firsthand accounts, of people who were diagnosed with terrible cancers and given only a few months to live, but were sent quickly into remission after seeing Dr. B (against their conventional doctors’ orders). I am happy for them. It is definitely hard to ignore these stories of people who get results. But I have heard a lot of them since I was diagnosed, stories of success of all different types (even from conventional treatments), and I have learned that can’t put myself into all of the cancer success stories out there. Each type of cancer is different and each person is different and different things work for different people. For whatever reason, this particular treatment worked for these people highlighted in the movie. I believe people should have options to choose from and should be able to pursue these options. I’m glad antineoplastons are an option and they work for some people.

But, they don’t work for everyone. For every 1 of these stories, there are perhaps hundreds that go in other directions. The movie doesn’t talk to the people it didn’t work for, but according to statistics given in the movie, at least for one of the brain cancers talked about, it worked for 25 percent of the patients. The other 75 percent, presumably, didn’t get any miracles. But no one wants to hear about those people, people want to hear about miracle cures (like my watermelon seeds). For cancer, but also for every other type of ailment out there. Man gets cancer, gives his diet and overhaul, and is cured. Overweight woman gets Lap-Band, and, almost overnight, becomes healthy again. But what about, man gets cancer and is given 6 months to live and dies? Or me, young woman gets cancer and lives with it?

My primary care physician told me once, “no treatment that is good isn’t also a little bit bad.” It’s hard not to wonder about antineoplastons, which have no side effects to speak of. What’s that saying? Something that sounds too good to be true probably is. In some ways, I feel like my current treatment falls into this category. Like it’s not hard enough. It’s doing so much good, but the side effects are pretty minimal, at least for now. My chemo drugs are by no means alternative and they work no miracles–I am not headed toward a cure with them. But they are working. And, what’s that other saying? If it ain’t broke, don’t fix it. Also, I don’t have $30,000 to spare.

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7 Responses to the (other) cure

  1. Paul Glowiak says:

    I want to wish you a very Merry Christmas and Happy New Year! I am a reader of yours and a native of Chicago. Thank you for writing about your fight with cancer, you are a brave young lady.

  2. Hey, Lindsey! I’m loving your writing. I’m totally with you on the different things work for different people concept. That’s why in my blog and in general conversation I don’t name the medications I’ve been taking–whether they work or not. I hope your meds keep working well for you. Lots of love! Olaina

  3. theapie says:

    If other researchers have failed to reproduce his results (as I have read) his stuff is bunk. Speaking as a scientific researcher by profession.

  4. Proops says:

    Lindsey, I have a pNET and I wouldn’t go near that clinic.
    Take a look at this article about them and all the articles that the writer links to which debunks them.
    I think you hit the nail on the head when you say “Each type of cancer is different and each person is different and different things work for different people.” If anyone promises you a miracle cure, they’re a liar. You should definitely read this too:
    I know – I really know – that it’s hard to contemplate never being cancer free, particularly when you hear about patients with other cancers who are clear on in remission. A specialist in London – they have several hundred patients and have been researching neuroendocrine tumours for over 10 years – told me that they don’t expect any of their patients to be free from cancer; just visibly free. In other words, they can reduce the symptoms to the point where the cancer is undetectable and just keep monitoring you until they see it again on a PET scan or through a blood marker, or you start to re-experience some symptoms.
    That’s pretty hard to live with, but at some point you’ve got to ask, who cares if I have cancer? I’m not going to let it control my life. I might have pills or injections to take, but as long as they don’t land me in hospital (which of course, they sometimes do), who needs to worry about being cancer-free?
    It’s crap and it involves lots of scans and tests and never feeling 100%. But people who promise miracle cures prey on that. I don’t know how they live with themselves. What they have is a disease that’s far worse than what we suffer from.
    I wish you luck with your treatment.

  5. shilpreet says:

    Thank you so much for sharing this informative post.. Stay blessed!!

  6. Roger says:

    Surely, a cancer patient like Steve Jobs, who had unlimited resources at his disposal, had heard of this Burzynski. Apparently, he did not buy the cure. And as far as conspiracies go, that there are people, and companies, that make money from treating cancer does not mean that they have unlimited power, nor that they are evil. The insurance industry, for example, would be very keen on a cure. Cancer costs them, big time.

  7. ella says:

    Lindsey, your instincts are spot-on. I’ve been following this guy Burzynski ever since I first heard of him, and the thing he mainly seems to be good at is getting patients’ families and communities to raise hundreds of thousands of dollars for him.

    Supposedly his treatments are all “clinical trials”, but other clinical trials are free. And yes, if this were working, the medical community would be all over it like green on a frog. Nobody wants cancer to remain uncured.

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