> From: Douglas Ober <Savia_Kalin@classic.msn.com>
> To: vianet@i-2000.com
> Subject: Biologic or Gene Therapy Clinical Trials for Leiomyosarcoma; Urea and Coley's Toxin
> Date: Saturday, September 13, 1997 3:55 PM
>
> Fellow Leiomyosarcoma Patients:
>
> Are any of you aware of biologic (interferon or other) clinical trials or
> clinics offering this for sarcoma patients, whether in the U.S. or abroad?
>
> Following upon the interesting letter of fellow writer Chris, are any of you
> aware of the use of urea by U.S. practitioners or persons abroad? Who offers
> it? I would appreciate any information you may have regarding practitioners,
> methods, success rates, etc. Apparently the procedure was started and written
> about by a Greek doctor, Dr. Danapolous, who is now retired. As Chris relates,
> it is generally described in Ralph Moss's book Cancer Therapy; the Independent
> Consumer's Guide.
>
> Further, do any of you have any information regarding Coley's Toxin as also
> described in Ralph Moss's book. While interesting to read an explanation of
> the procedure, what I and perhaps you need are names and addresses of
> hospitals or clinics which will administer the toxins. Moss refers generally
> to the fact that it is used in Germany and China, with some additional
> research in Japan. If you are unfamiliar with this, I urge you to read Moss's
> description. In a nutshell, many years ago Dr. Coley noticed that he could
> induce remissions in some patients by inducing illness and fevers with
> bacterial toxins which hyper-stimulated the body's immune response such that
> it not just addressed the bacteria, but also tumors. It was the precursor to
> much of today's research regarding interferon, etc. I do not know enough about
> the procedure (basically just the information from Moss's book) to
> intelligently form an opinion regarding this but would like to explore it
> further if I can find out exactly where it is used.
>
> Rather than go into detail about the manifestation of my particular disease, I
> think it would be most helpful for me to let those of you who have been
> recently diagnosed know of my experience with MAID (mesna, adriamicin,
> ifosfamide and dactimycin) and thoughts about my dealings with doctors and my
> particular hospitalization experience.
>
> The chemo was debilitating which one would expect in attempting to effect a
> cure and I do not regret undergoing it. However, I would never criticize
> those electing to forgo it. People new to cancer (and I found this with
> myself) just do not realize how fundamentally little is still known about
> cancer in general, and rare soft tissue cancers in particular.
>
> I was hospitalized at a so-called prestigious university medical center but
> believe now that I would have been better off at a good smaller hospital
> closer to home due to the strain of going back and forth to the center and the
> seeming indifference and outright rudeness of many of the inner city staff and
> sheer hospital bureaucracy. The reason I say this is that I now think that a
> chemo protocol is a recipe which can be administered just as easily at a
> competent smaller hospital even after you have consulted with experts at a
> major institution. Obviously one hopes to draw upon the expertise of doctors
> at a major institution and by all means, at the outset of your diagnosis it is
> important that you go to a center which has enough of a large patient
> population to have had some experience with sarcomas in order that you are
> correctly evaluated and can draw upon the expertise of experienced surgeons.
> However, you should know that doctors at large medical centers are extremely
> busy with huge patient loads and I personally found it difficult to sit down
> and have an in-depth, organized discussion of issues. (And yes, organize your
> questions cogently prior to meetings so that you do not waste valuable time.)
> Further, because leiomyosarcoma is so rare and little is known, other than
> seeking excellent surgical work, there was not much expertise to draw upon.
> Obviously these are my own impressions from my own experience and you should
> not make decisions based soley upon what I say. Further, unless you actually
> have a good local hospital nearby, this will not be an option.
>
> I hope this information has been useful to those of you who have recently been
> diagnosed. Question your doctors at every step and as overwhelming as it may
> initially be, do your own research into alternative medicine. There may be
> aspects of it that you may want to integrate into your conventional treatment
> or after carefully weighing your options, you may elect to forgo chemo and/or
> radiation. You should absolutely not leave everything in the hands of your
> doctors but be active. I personally found that in terms of fundamentally
> useful information, the experts really did not know that much more about the
> disease than I came to know through my own readings.