Re: Distance to go....

[Merv Swing <mervswingjr@xxxxxxxxxxx>]

Many thanks to Dr Fink for his treatise on alternative, unproven therapies.
I for one will stick to the tried and true.

Merv Swing
----- Original Message -----
From: "Robert A. Fink, M. D." <rafink@xxxxxxxxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Friday, December 19, 2003 8:22 PM
Subject: Re: Distance to go....


> On 19 Dec 2003 at 20:52, callie judd wrote:
>
> > it happened with
> > Debakey in South Africa and many pioneering medical advancements and
> > right now the DBS that goes on everyday - does so because of France's
> > willingness to venture into it and it is certainly not guaranteed to
> > give good results-patients are just being led into it (learning as
> > they go), many being hurt and even dying as a result, but you don't
> > hear those stories in the news...and as far as "peer review" - when it
> > comes to my husband looking at his survival waning away, inch by inch,
> > (and medications had him "on the way out" earlier this year) - he
> > really couldn't give a damn about peer review - it's the reality of
> > what he has presented before him to add time to his life that he makes
> > his decisions about....there is much to be discussed about the whole
> > process involved in this - which I hope to write about - my husband
> > and I have decided to go for something that may help advance a real
> > remedy (not worried about that word "cure" either), whether he can
> > survive it or not (knowing we have to rely on meds in the interim) -
> > John Ritter's little girl stood up with arms stretched upwards and
> > asked God to "drop him, drop him!" and when told "it doesn't work that
> > way" she replied "but what if it did, and we never tried"....the
> > wisdom of a child...we have gone 18+ years - there is a distance to
> > go...all we ask is for the help to get there...Marie and Judd
>
> Marie,
>
> DeBakey was not located in South Africa, he was in Houston, Texas.
> Christiaan Barnard was the South African surgeon who did the first heart
> transplant; and, while is certainly was surprising, it was not "curative".
In
> fact, the procedure was ultimately not successful and it remains a
somewhat
> questionable procedure today.
>
> There have been many "miraculous" procedures that have been developed
> around the world without benefit of good, controlled scientific research,
> especially in those diseases which are not fully treatable by scientific
> methods.  Many of these methods are harmful, and even the ones which are
> not harmful often result in the expenditure of large amounts of money
(which
> is not usually covered by insurance because the "treatment" is not
> scientifically valid).  People or groups who push these procedures often
claim
> that "organized medicine" is "against them" for financial reasons, but
when
> one looks at this claim, one should see that if a treatment was really
effective,
> it would be used by everyone and the "inventor" would indeed reap the
> financial benefits many times over.
>
> Below is pasted a short article which I wrote several years ago about
another
> doctor (a Dr. Burzynski) who claims to have a "cure" for another dread
> condition (brain tumors), and how such claims need to be looked at very
> carefully:
>
> -------------------------------------------------------------------
>
> BURZYNSKI ET AL, MY BASIC POSITION
>
> With the recent repeat run of questions regarding the Burzynski
> treatment ("antineoplastons"), I have experienced a new set of flames by
> certain members of this List.  My responses to those flames, if any, have
> been made to the individuals and have not been posted to the List.  I
> thought, however, that it was time for me to write a little note here
> about my attitudes towards "alternative therapies" and people like Dr.
> Burzynski.
>
> I am a scientist.  What I know about the treatment of disease is based on
> research done by myself and others and part of many years of scientific
> labors by many people.  I have seen many positive changes in the treatment
> of brain tumors and other neurological disease/injury in my 30-plus years
> of work in this field.  I also realize that there are still far too many
> conditions that we cannot cure (gliomas, brain stem tumors, and other
> conditions).  I am confident that, with the advance of science, we will
> eventually have answers to these currently incurable conditions.  In the
> meantime, our job is to alleviate suffering as much as we can.
>
> I am not a neurosurgeon for the money.  Most of my colleagues in
> medicine feel the same way.  Yes, we get paid for what we do; indeed,
> everyone must earn a living in order to support onself and one's family.
> Some physicians make a great deal of money, but those who do usually do so
> because they put in long hours and much effort into their practices.  Even
> those of us who are wealthy (and I am not one of these!) do not approach
> the incomes made by some entertainers, sports figures, and others who some
> might say do less to earn their incomes.
>
> I do not begrudge any physician the ability to make a good income.  On the
> other hand, I have never refused to care for a patient because they could
> not pay; and I have certainly not made a patient pay me simply for going
> over some records to decide if I would accept them in my care.  When doing
> research (and I have done my share), I have always done that work with an
> affiliation to a major University or other teaching institution, and the
> work was supported by grants, either Government or private in origin.
> Patients were not charged for treatment which was experimental or
> research-oriented.  I do not believe that it is ethical for patients to
> pay for treatment which is experimental and I do not support people who
> profit from experimenting on patients.
>
> There have been many instances where people have advocated new
> therapies for "dread" illnesses.  In the late 1950's when I was a
> medical student, my best friend, a young man who was but 20 years old, was
> stricken with testicular cancer and, after surgery and the
> state-of-the-art treatment for the time (testicular cancer is now highly
> curable with modern chemotherapy), he subjected himself to a treatment
> called "Krebiozen", a substance developed by a man whom was later shown
> to
> be a charlatan.  Sadly, this man attracted the interest of Dr. Andrew Ivy,
> a Nobel prizewinner from the University of Illinois, and, by connecting
> Dr. Ivy's name with Krebiozen, succeeded in profiteering off of hundreds
> of thousands of cancer sufferers before "skipping the country" with his
> ill-gained millions, leaving his patients with their disease.  Many of
> these "miracle cures" had their "testimonials" (of long survival or
> "cure"), but careful scrutiny, using scientific methods of laboratory
> analysis often proved that there was no cancer to begin with in the
> "cured" patients. Sadly, in the case of my friend, after his parents
> depleted their savings for the Krebiozen, Malcolm died in pain at our
> University Hospital, barely after completion of his sophomore year in
> medical school.  Our graduating class yearbook was dedicated to him.
>
> When scientists criticized the nonscientific aspects of Krebiozen and also
> criticized the financial aspects of Dr. Durovic (the "inventor"), people
> literally "came out of the woodwork" to accuse "organized medicine" of
> trying to "block a new treatment" because such treatment "would cost the
> medical establishment money".  This is a common thread among those who
> espouse these "new cures" with almost religious zeal. When Dr. Durovic
> left the country with his money (and Dr. Ivy was disgraced), the
> "testimonials" stopped.
>
> In the seventies and early eighties, another "miracle cure" came
> around.  This one was "Laetrile", an extract made from apricot pits,
> which contained a small amount of highly toxic cyanide.  It was later
> called "Vitamin B-17" to avoid inclusion as a drug by the FDA.  When
> Laetrile was finally tested by independent laboratories, it was found that
> many specimens contained no active ingredients, while other specimens
> contained levels of cyanide which, in children, could be very toxic and
> even fatal.  Laetrile was sponsored by a Dr. John Richardson, whose
> practice was right in the next town from where I practiced as a
> neurosurgeon, and Dr. Richardson's patients came from all over the country
> to receive the Laetrile injections.  Dr. Richardson had a deal with a
> local motel where the patients stayed, and there was hardly a week when
> one or more of these patients, often from a long distance away, would be
> brought to the Emergency Room of our hospital in a terminal condition from
> rapid spread of their cancer (Dr. Richardson could never qualify for
> hospital privileges and could not admit his patients to the hospital).  I
> cared for some of these patients during their terminal stages (many of
> them had metastases to the brain and/or spine), and they all said that
> they were "cured" by the Laetrile, and that what was going on at the time
> was due to "something else".  I also, interestingly, ran into several
> patients who developed non-cancer-related conditions while in the area for
> Laetrile treatment; and, while they were receiving care for that
> condition, tests revealed that there was no evidence of any cancer, or
> that cancer had ever been present.  I was never able to obtain biopsy
> evidence from Dr. Richardson in those cases.
>
> Dr. Richardson eventually, I believe, ran afoul of the legal
> authorities (I am not sure whether it was medicine-related or
> tax-related), but he eventually closed his practice and I believe he
> died some years ago.  When the FDA and other University facilities
> attempted to test Laetrile, no beneficial effect was ever found (when the
> patients actually had proven cancer), and the potentially toxic effects
> were substantiated.  I still occasionally hear of someone touting this
> substance, but it is no longer a major player in "alternative medicine".
>
> The common thread in many of these "miracle cures" is the following:
>
> 1. The method or "treatment" is *proprietary*; i.e., offered only by
> one person or institute.
>
> 2. It costs a lot of money and payment is usually required to be "up
> front".
>
> 3. The work is not being done through an established University or
> Government grant.  Such work (through Universities or grants) is
> usually free to the subjects.
>
> 4. The publicity for the work is mainly through "testimonials" and not in
> accepted, peer-reviewed scientific journals.  I recently reviewed some
> work published in an overseas journal about a new method of treatment of
> another "dread disease" (Parkinson's disease) and found that the "new
> method", being advanced by a proprietary researcher, was available only at
> the researcher's proprietary facility and was very expensive.  There had
> been a number of articles in this journal attesting to the validity of the
> work, but when I finally got a copy of the journal in question, I
> discovered that it was owned and published by the researcher himself, and
> that he was the basic "peer review" person!
>
> 5. If anyone attempts to question the motives of the proponents of
> these new "cures", the responses from the "testimonial people" are
> vigorous.  We (the critics) are merely trying to "preserve the profits of
> the medical establishment" and we are persecuting Dr. A or B because he is
> threatening us (in orthodox medicine).  It is a "conspiracy" to prevent a
> new cure from being brought to the public. Why are people so quick to
> question the motives of scientists?  If someone found a cure for cancer
> tomorrow, don't you think that most of us wouldn't immediately start using
> such for our patients as soon as it was shown to be safe and effective.
> That's what research is all about.
>
> There are many diseases and conditions which, to date, are incurable. I
> cannot cure glioblastomas, brain stem tumors, metastatic melanomas. All of
> the orthodox medical armamentarium to date is useless against these tragic
> conditions (for cure; we can certainly help temporarily).
>  When a patient wants to try "alternative treatment" under such
> conditions, I never attempt to block such, as long as they also
> consider the traditional treatment which may be helpful and which will not
> cause unnecessary pain or harm.  The destruction of a family's financial
> resources (by an expensive, unproven treatment method) is just as severe a
> side-effect (for the family) as is a reaction to toxic chemotherapy or
> radiation damage.
>
> If therapies such as Dr. Burzynski's "antineoplastons", Essiac tea,
> shark cartilage, angiogenesis inhibitors, immunotherapy, etc., have
> value in the treatment of brain tumors, then it will be shown through
> scientifically-valid research.  Such research will be financed by grants,
> either private or public, and not by the savings of middle-class and poor
> families who are desperately trying to salvage a few weeks or months of
> life for themselves or a loved one.  I would not take my family to many of
> these schemes (nor would I accept them myself); and I would advise my
> patients to avoid some of these as well.  If I am asked for my opinions
> concerning these "cures", I will give my honest reponses, flames or no
> flames.  And I will not be drawn into a "game" of invective and "blame" by
> the devotees.  As I have said before (and others disagree), medicine is a
> science, not a religion, and the eventual cure for malignant disease will
> come from scientific fact and not from "belief"!
>
>
> ------------------------------------------------------------------
>
> I wish you all the best, but repeat that I think that you are headed in a
> direction which is not going to be fruitful for you and your family.
>
>
> Best,
>
> Bob
>
> Robert A. Fink, M. D., F.A.C.S., P. C.
> Neurological Surgery
> 2500 Milvia Street  Suite 222
> Berkeley, CA  94704-2636  USA
> 510-849-2555     FAX: 510-849-2557
> <>
> "Ex Tristitia Virtus"
>
> Disclaimer:  That which is written in my e-mail is not to be
> considered as "medical advice".  Such advice can only be
> given after a formal, in-person, consultation between
> doctor and patient.
>
> **********************************************
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:listserv@xxxxxxxxxxxxxxxxxxxx
> In the body of the message put: signoff parkinsn

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:listserv@xxxxxxxxxxxxxxxxxxxx
In the body of the message put: signoff parkinsn