Subj: Fwd: [MOL] Marty , Put it to a vote and give people a CHOICE
Happy Holidays to my friends and former supporters in MOLdy places.
Although I have been off MOL since July, someone had the courtesy to forward
the following to me. I do not know Mr. Joseph Cane nor the circumstances
which led up to this letter from Mr. Cane. Is he just raising cane?
First of all, I hesitate to respond given the excellent hand which created the
Epistle. Mr. Cane, you are a credit to your tutors.
Approximately a year ago, we found out that my brother-in-law had cancer and
was given 60 - 90 days to live. About mid January, 1998, he was skidding
fast, down to about 98 pounds, chemo wasn’t working and things looked dire.
We got him onto Noni juice, Hydrazine Sulfate, Essaic Tea and other folksy
medicines. He died in July having never gone through more than a few minutes
of pain about 4 times. Aspirin and other mild analgesics were sufficient. He
had gotten back to about 118 pounds and held the weight. He never had weighed
over about 135 in his 70 years. Instead of living two or three months, he
thrived for seven months, virtually pain free, clear and alert, playing cards
and holding court in his small home. His wife, my sister, attributes his
relative success as the result of Noni and Essaic Tea and mostly, from the
love of his family, which included his 10 children and their families.
During his trials, I got onto MOL from late Nov. 1997 to about early March
1998, got off, then rejoined in the background from about mid May to July
1998. I was advised by mainstream MOLers to avoid Noni and other avant-garde
medicines.
I saw in that time, frequent exchanges between Marty and other care providers
and felt that Marty had the time and inclination to try his best to help
others. Marty even got into some national level activities which were
probably beneficial to MOL.
Eventually, the "GROUP" led by Marty and Lillian, took on sanctimonious robes
and began to pontificate. Anyone whose ideas were not in keeping with MMS,
i.e. Marty Main Stream, became persona-non-grata and it was sad to see.
The Marty approach was “ya gotta have hope and never give up and if you
suggest something that I haven’t already advocated, it must be snake oil
medicine”.
So, in frustration one day, I attacked Marty, in a gentle manner, I thought.
Well, Lillian jumped me from behind and some others were outraged and I
dropped the whole matter.
I felt that Marty and MOL were helping a lot of people get through some
terrible times. I felt that folks would probably follow their doctors’ advice
and use MOL as a crutch. I felt that Marty was spreading sunshine and did
more good than harm. Several people contacted me at that time (around May
-July 1998) saying I should continue and try to get Marty out of the scene.
Others said we should not make waves because Marty meant well. Some said they
thought Marty was right.
My perception was that Marty condemned everyone who did not agree with him and
that Lillian was following blindly. Sometimes, between all the sweet folksy
comments, there appeared a woman who was very small, bitter and acrimonious.
That bothered me more than Marty, because there were some insidious comments
from Lillian deriding anyone who expressed any opinions which shed light on
Marty’s delusions. Marty had center stage and Lillian seemed very positive
and even nice.
Looking at Marty's texts, it was obvious that he was not well educated, but I
thought he was earnest and trying to help. So, I backed off as soon as I had
started because it seemed wrong to me to demean someone who seemed to be
trying harder than I. So, who was I to belittle Marty?
Well, now someone has forwarded the following to me and although I have not
seen MOL mail for months, I can pretty well picture what has transpired.
About February, 1998, Marty castigated a fellow named Richard who was
peddling Noni Juice.
It was a merciless attack couched in the idea that Marty was keeping some
snake oil salesman from taking advantage of the bereaved members of MOL.
I do not believe Richard was anything but genuine and concerned. Sure if you
bought Noni he would make some money but he had already turned over some of
his profits in supporting some MOL cancer victims.
Now it seems that someone named Joseph Cane has taken a stance that Marty has
disagreed with.
Marty in full Christian Charity, has probably tried to make Mr. Cane's
considerations seem like bullshit and so, it appears that Mr. Cane is now
interested in censoring Marty.
Well folks, Marty has been blind to several efforts by several people to get
non-mainstream considerations into the discussions in the past. John seemed
more open minded and informed.
Marty’s basic chant was always, keep the hope alive, etc. He has advocated
the approved methods and practitioners and had quite an extensive and
impressive information basis. Marty has put out a lot of information, none-
the-less, Marty seemed unable to produce extensive original texts that were
coherent.
In the past, Marty deliberately angered some folks whose husbands subsequently
died of cancer. They objected to the “don’t worry, be happy” approach and
said they need to face the impending deaths of their spouses and all the “keep
the hope alive” stuff was wearing thin and getting them down.
They were seeking hope from MOL, but mainly, they were looking for potential
solutions and not the old bromides. Since there were no conventional
solutions left, they were looking at alternative medicines. Marty and Lillian
slam dunked them mercilessly.
So, judging by the text from Mr. Cane, Marty seems to have struck again. Has
his positive contribution been sufficient to grant him continued access to MOL
cancer victims and supporters. Does his approach deride folks who are looking
at alternative approaches? I haven’t been watching but remind all of you that
"those who do not learn from the past ... etc."
Marty, could you be content to sit back and only answer questions for which
you have hard information and stay away from the ‘opinions sides’ of
arguments.
Marty, you have a lot of good information. If you continue to comment
negatively on issues of which you have no expertise, you will probably be
censored eventually and suffer the same fate your opinionated biases brought
to Richard who was kicked off MOL last winter.
It would be a loss to the members of MOL if Marty left. Marty does have some
excellent data files. Is there a compromise?
Now for the text that got me going. It was forwarded by a current member of
MOL. My thanks to this MOL servant, who wishes to remain unnamed.
To all of you MOLdy Ones and Mr. Cane, Happy Holidays and the best to you and
yours.
VR Bob
********************************************
Dear friends ,
I am a relative newcomer to this list and a relative bystander to the
journey that all of you are on , but I feel obligated to respond to the
question
involving the information that Marty has providing on the list . First I think
it is important to acknowledge the credibility and good intentions of all
parties involved in the debate . I hope that all of you will also accept these
opinions in the same light .
Next let me pose you a scenario . If you or a loved one , having been
diagnosed and received primary and adjuvant therapy for the condition , began
presenting with a rising tumor marker but diagnostics could not indicate a
specific cause (Cancer reoccurring?). Would you ask questions of the Doctor
when he/she told you of their proposed actions? I have had to and this is not
because I am a professional but rather that I understand that the course of
action that is being proposed is equivocal . Not equivocal in the sense that
there is not the latest and best information to back it up but rather that
there is ONLY the latest and best information to back it up . If you follow
the treatment guidelines you see changes based upon new information effecting
what the most prudent course of action would be . What is equivocal today is
often unequivocal tomorrow and even if the gathering of knowledge came to a
stand still today , the contoversy of interpretation of those results would go
on . This is due to the varied nature of the information provided which go
into the
decision trees .
Case in point is a group of Doctors from the South West Oncology Group in
the book Adjuvant Therapies of Cancer II . The Doctors were tearing into each
other over the use of historical studies verses clinical study information
being used to guide treatment choices . This book is of their 1979 conference
results and if you compared it with current ASCO or SWOG recommendations the
effect would be both unsettling and enlightening . Many of their proposals
have changed , not only because of new drugs and treatment advances but also
because of new interpretations of existing data and studies . So in some ways
the emporer has no clothes . The up side is the people who are being treated
are in many cases surviving longer with a better quality of life . So
information and debate translate into LIFE for us and our loved ones . With
this and basic medical ethics in mind the most liberating event in the process
is patient choice. It begins with choice of Hospital and Doctor and continues
on through the process .
Next point , if ten years ago someone came on the list speaking of a study
which indicated potential help for people who used a substance derived from
the bark of the English yew tree (Taxus Baccata ) I would have approached it
with guarded optimism . Today I looked in my 1987 Physician Desk Reference and
found no other antineoplastics derived from that source but there in my 1998 I
find Taxol . Probabilities are that some of the alternative treatments are
going to have the same fate .
My personal opinion which drives my own choices and the advice I offer for
my mother's consideration on her cancer journey ( stage IV Ovarian survivor of
2 years , Given six months with out treatment ) are chemicals are drugs .
Whether they come from medication , herbs , the environment ,supplements , or
the elements of the food we eat .They all cause chemical reactions in the body
from the subtle to the profound . Per the physiology and biology texts ,
some are understood quite well , some are not and some have yet to be
discovered. Doctors lead the way in understanding information and should be
respected but not left unquestioned . I find Marty's posts a fruitful source
of information for research and consideration .
Mom's choice was surgery and adjuvant therapy . My aunt with breast cancer
chose surgery and the alternative treatment . What would have their outcomes
been based on the best and latest information had they chose another course of
action . I ran them through the clinical decision analysis procedure proposed
by W. Scott Richardson M.D.and Allan S. Detsky M.D., Ph.D. from the Evidence-
Based Medicine Working Group and based on their outcomes , the answer is
equivocal .
With all of this in mind I propose a vote by fellow MOLERS to determine
whether Marty is having a misleading effect on us . This keeps decisions in
the hands of those who are effected by the outcomes of their decisions .
Whether Marty chooses to abide by the vote is his choice .
Please accept my apologies if any one is offended or in anyway effected
adversely by this post. And being only a caregiver I abstain from the vote,
if all of you chose to vote on this issue , my Mom would like to vote .
Take Care and Hang Tough
Joseph Cane
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