Hi All,

My son, Malcolm, (11 yr old with Pelvic Ewing's), founded his non-profit to
raise awareness and research funding for peds cancer, (visit
www.makenoise4kids.org), and we are currently making a pediatric cancer
awareness video to debut at the Foundation's kick-off.
We want to put as many faces on pediatric cancer as possible, so please consider
sending us a pre-diagnosis photo to put in the video-- include first name and
age at the time of diagnosis.  We are using pre-diagnosis photos so people can
see that virtually every kid was a happy healthy active kid until they got
cancer.  So whatever great photo you may have, be it school photo, sports photo,
hanging out at the beach... whatever you have that shows a happy healthy kid
doing everyday kid things would be great.  Email photos to me at
info@... We need photos by Thanksgiving to be able to include
them in the video.
Thank you so much!
Julie Sutherland, (Malcolm's mom).
jasemail@...
info@...

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I want to thank all who have posted information on peculiar patterns of
Ewing's in their communities.  I hope to reply to each issue raised in
these messages in a series of short messages in the coming days.  I have
been delayed in responding by some significant developments.

In my message #495 to this group, I posted the contents of a letter to
Gov. Deval Patrick describing my proposal for a comprehensive,
multidisciplinary study of the Cape Cod Ewing's Sarcoma Cluster.   The
governor's Executive Office of Health and Human Services tried to blow
me off, having a nice young lady call to tell me of a DPH study of which
I was all too well aware.  This person had been on the job two weeks,
and hadn't even seen my original letter to the governor.  She offered to
receive a copy of that letter from me, as well as criticism from
epidemiologists who found the DPH study "fatally flawed."

I am pleased to have had the support from an epidemiologist in a federal
agency who wrote as a private citizen criticizing the DPH study and
offering suggestion on how an investigation should be conducted.  This
was followed last week by a letter cosigned by four faculty members of
the school of public health at a local university.   These scientists
are well known and respected for "conducting community-based research on
the health effects of environmental pollution." Their expertise extends
to the fields of epidemiology, environmental health, and biostatistics.
They asked for adequate funding of a well-designed and comprehensive
study "by a multidisciplinary team of experts in close collaboration
with the affected community."

To be sure, funding will be a problem.  I have written to our local
congressman, Rep. William Delahunt, asking him to obtain  federal
funding.  These scientists will also be writing to Delahunt as well.  I
pointed out that Sen. Harry Reid and Sen. Arlen Spector obtained funding
for university based investigatoins of cancer clusters in their states.

Oftentimes, the dilligent investigation of localized outbreaks of
disease yields progress in finding a cause, which may lead to protection
or elimination.  The Cape Cod Ewing's Sarcoma Cluster has a sufficient
number of cases (more than five) to meet the standard of stastical
significance, with less (actually much less) than a 5% chance that it is
random.  That does not mean that a common factor will be found, but if
you don't ask the right questions, you don't get the answers.

It is possible that a dilligent investigation of peculliar groups with
lesser numbers of Ewing's cases in Beverly, MA, Norton, VA, or the
communities surrounding Chicago and Detroit will yield additional
information.  We have noted cases of rhabdomyosarcoma and osteochondroma
in the Cape Cod community coincident with the Ewing's cluster.
Rhabdomyosarcoma has also been noted in other communities with Ewing's.

Those seeking direction on how to contribute may want to drop Rep.
Delahunt an email using the congress.org resource.  You can let your own
representative know that the Cape Cod Ewing's Cluster has been brought
to the attention of  Rep. Delahunt.

You could also contact your state department of public health describing
the patterns of Ewing's you observe.  You'll probably be blown off;
there is common response to public inquiries that almost rises to the
level of a doctrine.  However, (there is a slim chance) you might get
someone who is willing to look deeper.  A state department of public
health has access to the state cancer registry which will identify each
case.  Ewing's often is overlooked, as is is diluted in the statisitcs
of bone cancer, which is sometime omitted from statistical reports on
adult cancer.  Find out how Ewing's and other childhood cancer is
reported by your registry.

Bernie

My son was diagnosed with ewings in 2000 at age 18 and lived 2 years-he went
through the gambit of treatment-how can we find out if others in our regions or
cities also were diagnosed. I am very interested in finding links if there are
any to this disease, Hats off to Bernie for his persistance in understanding and
fighting this very untalked about disease of our children. I would be willing to
do any research that could assist in compilying information to better understand
this disease. I am from Oregon if needed.
 
Teresa


--- On Wed, 2/11/09, Sharon Kory <sharonlkory@...> wrote:

From: Sharon Kory <sharonlkory@...>
Subject: Re: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly,
Massachusetts
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, February 11, 2009, 7:28 AM






Bernie,
I believe I have written you in the past regarding our personal experience with
Ewings. My son, diagnosed at age 18 in year 2000 was one among a group of 5 in
our area that were diagnosed around the same time. We live in a suburb of
Detroit, called Bloomfield Hills.  If there is any information that I can offer
to help with your investigation, I would be happy to provide it. This is a noble
effort on your part and I can say personally, it will mean alot to end some of
the mystery surrounding this disease. Fortuneately, our son is a survivor, but
the experience will never escape us.

Sharon Kory
 
Sharon Kory Interiors Inc
29000 Inkster Rd. Suite 120
Southfield, MI 48034
phone:    248.357.3600 ext 203
fax:         248.357.3646

--- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroup s.com> wrote:

From: bjyoung716 <no_reply@yahoogroup s.com>
Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly, Massachusetts
To: ewingssarcoma@ yahoogroups. com
Date: Friday, January 30, 2009, 11:36 PM

Friends:

This program ran on TV a few minutes ago:

http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
<http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>

The statistical analysis (average, standard deviation) of the
Masachusetts Department of Public Heath and Air Force data on the PAVE
PAWS was in error. The nature of the error is that average values are
under-reported and standard deviation values are unstable and, for most
practical purposes, useless.

Anyone who is aware of unusual patterns of cases of Ewing's is asked to
report them here. I am preparing a request of out congressional
reperesentative for federal funding of an independent, dilligent,
multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod. I
have some moral support from epidemiologists at a local university.
Senators in two other communities have funding for university
investigations of cancer clusters among their constituents. With no
known risk factors for this disease, and these peculiar patterns showing
up, an investigation seems like a no-brainer.

Bernie

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

Bernie,
I believe I have written you in the past regarding our personal experience with
Ewings. My son, diagnosed at age 18 in year 2000 was one among a group of 5 in
our area that were diagnosed around the same time. We live in a suburb of
Detroit, called Bloomfield Hills.  If there is any information that I can offer
to help with your investigation, I would be happy to provide it. This is a noble
effort on your part and I can say personally, it will mean alot to end some of
the mystery surrounding this disease. Fortuneately, our son is a survivor, but
the experience will never escape us.


Sharon Kory
 
Sharon Kory Interiors Inc
29000 Inkster Rd. Suite 120
Southfield, MI 48034
phone:    248.357.3600 ext 203
fax:         248.357.3646

--- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroups.com> wrote:

From: bjyoung716 <no_reply@yahoogroups.com>
Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly, Massachusetts
To: ewingssarcoma@yahoogroups.com
Date: Friday, January 30, 2009, 11:36 PM







Friends:

This program ran on TV a few minutes ago:

http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
<http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>

The statistical analysis (average, standard deviation) of the
Masachusetts Department of Public Heath and Air Force data on the PAVE
PAWS was in error. The nature of the error is that average values are
under-reported and standard deviation values are unstable and, for most
practical purposes, useless.

Anyone who is aware of unusual patterns of cases of Ewing's is asked to
report them here. I am preparing a request of out congressional
reperesentative for federal funding of an independent, dilligent,
multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod. I
have some moral support from epidemiologists at a local university.
Senators in two other communities have funding for university
investigations of cancer clusters among their constituents. With no
known risk factors for this disease, and these peculiar patterns showing
up, an investigation seems like a no-brainer.

Bernie

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

I live in Frankfort, IL. My husband passed away from Ewings about 1 1/2 years
ago. When he was going through his battle, we knew of 3 people in Frankfort
(small town) who had it as well and 1 small girl down the street with
Rhabdomyosarcoma. (similiar).
Always thought that was strange since it is so rare, but the doctor didn't
really say much about it when we mentioned it. Always made me wonder though.
Would love to see more research done on it and for there to be a cure in the
near future. It is an awful disease!

--- On Tue, 2/10/09, JAZZMBM <jazzmbm@...> wrote:

From: JAZZMBM <jazzmbm@...>
Subject: [Ewings Sarcoma] Re: 2 cases of Ewing's in friends, Beverly,
Massachusetts
To: ewingssarcoma@yahoogroups.com
Date: Tuesday, February 10, 2009, 8:53 PM







Hi Bernie,

The cluster is very interesting to me. I live in Norton, Virginia,
our population is 3000 I believe. Yes three thousand. I know of 3
Ewings Sarcoma cases here just in the time that my daughter was
diagnosed. There has been several neuroblastomas too, which according
to our pediatric oncologist has similarities to Ewings. For that
small of a population I think there is something wrong!!!!

Marybeth

--- In ewingssarcoma@ yahoogroups. com, kelly carlton
<johnsmom9983@ ...> wrote:
>
> I pray these cases will unlock the mystery of Ewings and lead to a
cure. I lost my only child to this  terrible disease 2 years ago. Let
me know if there is anything I can do.
>
> --- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroup s.com> wrote:
>
> From: bjyoung716 <no_reply@yahoogroup s.com>
> Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly,
Massachusetts
> To: ewingssarcoma@ yahoogroups. com
> Date: Friday, January 30, 2009, 11:36 PM
>
>
>
>
>
>
>
> Friends:
>
> This program ran on TV a few minutes ago:
>
> http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
> <http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>
>
> The statistical analysis (average, standard deviation) of the
> Masachusetts Department of Public Heath and Air Force data on the
PAVE
> PAWS was in error. The nature of the error is that average values
are
> under-reported and standard deviation values are unstable and, for
most
> practical purposes, useless.
>
> Anyone who is aware of unusual patterns of cases of Ewing's is
asked to
> report them here. I am preparing a request of out congressional
> reperesentative for federal funding of an independent, dilligent,
> multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod.
I
> have some moral support from epidemiologists at a local university.
> Senators in two other communities have funding for university
> investigations of cancer clusters among their constituents. With no
> known risk factors for this disease, and these peculiar patterns
showing
> up, an investigation seems like a no-brainer.
>
> Bernie
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>



















[Non-text portions of this message have been removed]

Hi Bernie,

The cluster is very interesting to me. I live in Norton, Virginia,
our population is 3000 I believe. Yes three thousand. I know of 3
Ewings Sarcoma cases here just in the time that my daughter was
diagnosed. There has been several neuroblastomas too, which according
to our pediatric oncologist has similarities to Ewings. For that
small of a population I think there is something wrong!!!!

Marybeth

--- In ewingssarcoma@yahoogroups.com, kelly carlton
<johnsmom9983@...> wrote:
>
> I pray these cases will unlock the mystery of Ewings and lead to a
cure. I lost my only child to this  terrible disease 2 years ago. Let
me know if there is anything I can do.
>
> --- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroups.com> wrote:
>
> From: bjyoung716 <no_reply@yahoogroups.com>
> Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly,
Massachusetts
> To: ewingssarcoma@yahoogroups.com
> Date: Friday, January 30, 2009, 11:36 PM
>
>
>
>
>
>
>
> Friends:
>
> This program ran on TV a few minutes ago:
>
> http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
> <http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>
>
> The statistical analysis (average, standard deviation) of the
> Masachusetts Department of Public Heath and Air Force data on the
PAVE
> PAWS was in error. The nature of the error is that average values
are
> under-reported and standard deviation values are unstable and, for
most
> practical purposes, useless.
>
> Anyone who is aware of unusual patterns of cases of Ewing's is
asked to
> report them here. I am preparing a request of out congressional
> reperesentative for federal funding of an independent, dilligent,
> multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod.
I
> have some moral support from epidemiologists at a local university.
> Senators in two other communities have funding for university
> investigations of cancer clusters among their constituents. With no
> known risk factors for this disease, and these peculiar patterns
showing
> up, an investigation seems like a no-brainer.
>
> Bernie
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

I pray these cases will unlock the mystery of Ewings and lead to a cure. I lost
my only child to this  terrible disease 2 years ago. Let me know if there is
anything I can do.

--- On Fri, 1/30/09, bjyoung716 <no_reply@yahoogroups.com> wrote:

From: bjyoung716 <no_reply@yahoogroups.com>
Subject: [Ewings Sarcoma] 2 cases of Ewing's in friends, Beverly, Massachusetts
To: ewingssarcoma@yahoogroups.com
Date: Friday, January 30, 2009, 11:36 PM







Friends:

This program ran on TV a few minutes ago:

http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html
<http://wbztv. com/health/ ewings.sarcoma. rare.2.923006. html>

The statistical analysis (average, standard deviation) of the
Masachusetts Department of Public Heath and Air Force data on the PAVE
PAWS was in error. The nature of the error is that average values are
under-reported and standard deviation values are unstable and, for most
practical purposes, useless.

Anyone who is aware of unusual patterns of cases of Ewing's is asked to
report them here. I am preparing a request of out congressional
reperesentative for federal funding of an independent, dilligent,
multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod. I
have some moral support from epidemiologists at a local university.
Senators in two other communities have funding for university
investigations of cancer clusters among their constituents. With no
known risk factors for this disease, and these peculiar patterns showing
up, an investigation seems like a no-brainer.

Bernie

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Friends:



This program ran on TV a few minutes ago:



http://wbztv.com/health/ewings.sarcoma.rare.2.923006.html
<http://wbztv.com/health/ewings.sarcoma.rare.2.923006.html>





The statistical analysis (average, standard deviation) of the
Masachusetts Department of Public Heath and Air Force data on the PAVE
PAWS was in error.  The nature of the error is that average values are
under-reported and standard deviation values are unstable and, for most
practical purposes, useless.



Anyone who is aware of unusual patterns of cases of Ewing's is asked to
report them here.  I am preparing a request of out congressional
reperesentative for federal funding of an independent, dilligent,
multidisciplinary study of the Ewing's sarcoma cluster on Cape Cod.  I
have some moral support from epidemiologists at a local university.
Senators in two other communities have funding for university
investigations of cancer clusters among their constituents.  With no
known risk factors for this disease, and these peculiar patterns showing
up, an investigation seems like a no-brainer.



Bernie



[Non-text portions of this message have been removed]

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Hi

It would be great to find out what is causing this cancer .

its a desperate diease .

keep up the good work.

patricia smith
ireland

   ----- Original Message -----
   From: bjyoung716
   To: ewingssarcoma@yahoogroups.com
   Sent: Sunday, August 24, 2008 5:06 AM
   Subject: [Ewings Sarcoma] Proposal for Research: Cape Cod Ewing's Sarcoma
Cluster


   Governor Deval Patrick held a town meeting on Cape Cod two weeks
   ago. I was the second questioner and asked his support for a study
   of the Cape Cod Ewing's Sarcoma Cluster. I handed his aid a leter
   describing the cluster and my desire for an independent
   multidisciplinary study of the cluster.

   I received a letter this week from him saying that he is asking his
   Secretary of Health and Human Services, Dr. JudyAnn Bigby and her
   staff to respond to me.

   Those who are so moved may want to write to her encouraging her to
   give this matter her careful consideration. It may lead to
   identifying the first known risk factor for Ewing's sarcoma. My
   daughter Holly and her coach attended a talk by Sen. Kennedy's son
   who said if his father gets a letter, it goes in the waste basket.
   If he gets 100 letters, he pays attention.

   As crass as this sounds, my experience confirms it. Kennedy has not
   been responsive the two time I have written. I'm told it takes about
   $15,000 to get the attention of a senator. Maybe we can do better at
   the state level.

   You can write to

   Dr JudyAnn Bigby, Secretary
   Executive Office of Health & Human Services
   One Ashburton Place
   11th Floor
   Boston, MA 02108
   617-573-1600

   Yes, it's "JudyAnn," so be careful. The Governor has asked her/her
   staff to contact me.

   People at the National Disease Clusters ALliance have been trhying to
   muster spport from the professional community: epidemiologists,
   engineers, lawyers, doctors, etc. Meanwhile, I put together a scope
   of work in the form of a proposal for what a thorough and dilligent
   investigation should include.

   I am posting it here so that anyone who has someting to contribute,
   sees something I missed, or can fill in some blanks might be
   encouraged to do so.

   Bernie

   ************************************************************

   A Multidisciplinary Investigation of Possible Causes of the
   Cape Cod Ewing's Sarcoma Cluster
   August 23, 2008

   During the years 1995-2004, Ewing's sarcoma occurred on Cape Cod at a
   statistically significant standardized incidence ratio of 384. Two
   deaths have resulted from this cluster. Ewing's sarcoma is a rare
   pediatric bone cancer with no known risk factors. It is the result
   of double strand DNA breaks and a translocation error, usually
   involving chromosomes 11 and 22.

   There are compelling reasons to conduct a diligent and thorough
   investigation of the Cape Cod Ewing's Sarcoma Cluster. If a cause is
   not identified, the community lives in doubt that it is over, and in
   fear that it may occur again. If an environmental cause is
   identified, it may be eliminated. If an environmental cause is
   identified which cannot be eliminated, an understanding of the cause
   may suggest actions to minimize risk, or suggest surveillance
   practices which may lead to early diagnosis and successful
   treatment. If the cluster is the result of peculiar lifestyle
   factors, it is possible to eliminate those factors. A diligent study
   of this cluster may advance the understanding of this disease.

   One common factor has been identified which is unique to Cape Cod,
   and which has geographic and temporal associations with the Ewing's
   sarcoma cases: exposure to intense, pulsed, circularly polarized
   electromagnetic radiation from the 1.1 million watt Air Force PAVE
   PAWS phased array radar station. Its stated purpose is to conduct
   long range surveillance of intercontinental ballistic missiles and
   cruise missiles out to a distance of 3000 miles, and to track
   satellites and space debris. While its scanning pattern is described
   as pseudo-random, a more regular enhanced search mode is available
   which would increase the exposure by a factor of 16. This radar
   station is on the same military reservation which dispatched jet
   fighter aircraft to New York City on the morning of September 11,
   2001. A temporal clustering of eight Ewing's sarcoma cases occurred
   in the years 2002-2005. A case should be expected on Cape Cod once
   every 6.7 years.

   The Ewing's sarcoma cases lived, worked, or attended schools at
   exposed geographic locations expected to receive high levels of
   electromagnetic radiation from the PAVE PAWS radar. The two cases
   which resulted in deaths attended high schools on a path where two
   radar beams overlap, and on which more pulses are transmitted.

   The high incidence of Ewing's sarcoma on Cape Cod and the temporal
   and geographic associations between the PAVE PAWS radar and the
   Ewing's sarcoma cases were sufficiently compelling that the
   Massachusetts Department of Public Health conducted an
   investigation. Part of that investigation involved measurement of
   the power flux density of the radar pulses. Measurements were
   conducted in 2007 at sites associated with the Ewing's cases, and at
   other control sites chosen to have similar elevations and distances
   from the radar as the Ewing's cases. No comparison measurements were
   made at distances beyond the Ewing's case farthest from the radar, or
   at highly populated areas shaded from the radar by the terrain. This
   was a fatal design flaw in the measurement program.

   The study was also deficient in the analysis of the measurements. It
   failed to note that measurements in 2004 were 40-500 times higher
   than measurements in 2007 at the same sites. It failed to notice
   that the peak measurements at some sites in 2007 were less than
   temporal averages in 2004; because of the timing of the pulses, peaks
   should be thousands of times greater than temporal averages. The
   Massachusetts Department of Public Health lacks the engineering
   expertise to analyze and understand the radar measurements.

   In any disease cluster there are confounders. There may be
   agricultural practices, land use patterns, geological features, or
   natural biological organisms unique to Cape Cod which are factors in
   this cluster. The cause may be a combination of factors rather than a
   single factor.

   There remains a need for a diligent and comprehensive
   multidisciplinary study of the Cape Cod Ewing's Sarcoma Cluster
   involving epidemiology, engineering, and molecular biology. It is
   imperative that it be conducted by independent parties who are
   unbiased and who are not pressured to defend a particular doctrine,
   technology, or organization.

   An epidemiologic investigation should begin with a complete and
   detailed medical history of these cases designed to identify or
   eliminate common factors in the Cape Cod Ewing's Sarcoma Cluster.
   Lifestyle patterns should also be identified. There should be a
   review of other epidemiologic studies of the higher incidence of
   breast cancer and childhood cancer on Cape Cod.

   The presence of a unique engineered facility with a history of
   environmental impact statements, research investigations,
   specification changes, hardware changes and continuing community
   questions about its operational safety requires an engineering review
   by parties not obliged to defend the technology. A review of peak
   power flux density measurements made in 2004 which were not compared
   with published specifications, and were not even plotted, is
   required. Approximately half of those measurements are traceable to
   the maximum possible output of one particular instrument with the
   result that the reported values are clipped at levels below the true
   values. That renders a larger body of epidemiologic research and
   predictions of the intensity of human exposure based on those
   measurements of dubious value.

   It is also necessary to resolve the statements made to the
   Massachusetts Department of Public Health in 2007 regarding the
   presence of outside interference in the 2004 measurements which
   contradict the assurances given six different times that outside
   interference was not a factor in the 2004 measurements. Engineering
   analysis supports the statements made in 2004 that the measurements
   were indeed from the PAVE PAWS radar and not outside interferers.

   Though under-reported due to the clipping error, the peak power flux
   density measurements reported in 2004 exceeded the published radar
   specifications at 10 of 50 sites measured. At one site 18.5 miles
   from the radar, the approximate distance of homes of three Ewing's
   sarcoma cases, the radar was 46 times the value predicted by
   published specifications, and consistent with the main beam of the
   radar. The public has been repeatedly assured that the main beam of
   the radar is directed a minimum of three degrees above the horizon at
   the radar. This site yielded the strongest radar signal measured in
   2004 and 2007.

   Engineering analysis can also predict how radar exposure may be
   enhanced in metal buildings such as schools, on conducting surfaces
   such as salt water beaches, and in the human body itself. Finite
   Difference Time Domain analyses to determine how electromagnetic
   radiation is absorbed by humans of various sizes has been used to
   show that current safety standards may not adequately protect
   children. That research should be validated and extended to humans
   of various sizes and in various postures such as sitting or the fetal
   position.

   Molecular biology and biomedical engineering studies can determine if
   the PAVE PAWS radiation exploits a weakness leading to chromosomes
   breaks linked to Ewing's sarcoma, or if it promotes a migration of
   genetic material within the cell and the translocation error leading
   to carcinogenesis. The molecular weight and moment of inertia, and
   electrical charge and dipole moment of genetic material involved in
   the Ewing's translocation must be determined. In combination with
   calculations of the electrical field which is present in the body the
   response of the genetic material may be determined. If
   electromagnetic radiation induces a biologic response, this type of
   study has the potential of leading to an etiology for Ewing's sarcoma.

   There is a cost to be born in supporting such a thorough and detailed
   investigation. However, it must be recognized that the cost of
   treating a case of Ewing's sarcoma is often several million dollars.
   If a remission is achieved, follow-up medical testing is required for
   life. Unfortunately, some cases which are successfully treated
   develop other cancers related to the intensive initial treatment. It
   is essential that we learn as much about the causes of the Cape Cod
   Ewing's Sarcoma Cluster as possible.

   End of Message





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database 3382 (20080823) __________

   The message was checked by ESET NOD32 Antivirus.

   http://www.eset.com


[Non-text portions of this message have been removed]

Governor Deval Patrick held a town meeting on Cape Cod two weeks
ago. I was the second questioner and asked his support for a study
of the Cape Cod Ewing's Sarcoma Cluster. I handed his aid a leter
describing the cluster and my desire for an independent
multidisciplinary study of the cluster.

I received a letter this week from him saying that he is asking his
Secretary of Health and Human Services, Dr. JudyAnn Bigby and her
staff to respond to me.

Those who are so moved may want to write to her encouraging her to
give this matter her careful consideration.  It may lead to
identifying the first known risk factor for Ewing's sarcoma.  My
daughter Holly and her coach attended a talk by Sen. Kennedy's son
who said if his father gets a letter, it goes in the waste basket.
If he gets 100 letters, he pays attention.

As crass as this sounds, my experience confirms it.  Kennedy has not
been responsive the two time I have written.  I'm told it takes about
$15,000 to get the attention of a senator.  Maybe we can do better at
the state level.

You can write to

Dr JudyAnn Bigby, Secretary
Executive Office of Health & Human Services
One Ashburton Place
11th Floor
Boston, MA  02108
617-573-1600

Yes, it's "JudyAnn," so be careful.  The Governor has asked her/her
staff to contact me.

People at the National Disease Clusters ALliance have been trhying to
muster spport from the professional community: epidemiologists,
engineers, lawyers, doctors, etc.  Meanwhile, I put together a scope
of work in the form of a proposal for what a thorough and dilligent
investigation should include.

I am posting it here so that anyone who has someting to contribute,
sees something I missed, or can fill in some blanks might be
encouraged to do so.

Bernie

************************************************************

A Multidisciplinary Investigation of Possible Causes of the
Cape Cod Ewing's Sarcoma Cluster
August 23, 2008

During the years 1995-2004, Ewing's sarcoma occurred on Cape Cod at a
statistically significant standardized incidence ratio of 384. Two
deaths have resulted from this cluster. Ewing's sarcoma is a rare
pediatric bone cancer with no known risk factors. It is the result
of double strand DNA breaks and a translocation error, usually
involving chromosomes 11 and 22.

There are compelling reasons to conduct a diligent and thorough
investigation of the Cape Cod Ewing's Sarcoma Cluster. If a cause is
not identified, the community lives in doubt that it is over, and in
fear that it may occur again. If an environmental cause is
identified, it may be eliminated. If an environmental cause is
identified which cannot be eliminated, an understanding of the cause
may suggest actions to minimize risk, or suggest surveillance
practices which may lead to early diagnosis and successful
treatment. If the cluster is the result of peculiar lifestyle
factors, it is possible to eliminate those factors. A diligent study
of this cluster may advance the understanding of this disease.

One common factor has been identified which is unique to Cape Cod,
and which has geographic and temporal associations with the Ewing's
sarcoma cases: exposure to intense, pulsed, circularly polarized
electromagnetic radiation from the 1.1 million watt Air Force PAVE
PAWS phased array radar station. Its stated purpose is to conduct
long range surveillance of intercontinental ballistic missiles and
cruise missiles out to a distance of 3000 miles, and to track
satellites and space debris. While its scanning pattern is described
as pseudo-random, a more regular enhanced search mode is available
which would increase the exposure by a factor of 16. This radar
station is on the same military reservation which dispatched jet
fighter aircraft to New York City on the morning of September 11,
2001. A temporal clustering of eight Ewing's sarcoma cases occurred
in the years 2002-2005. A case should be expected on Cape Cod once
every 6.7 years.

The Ewing's sarcoma cases lived, worked, or attended schools at
exposed geographic locations expected to receive high levels of
electromagnetic radiation from the PAVE PAWS radar. The two cases
which resulted in deaths attended high schools on a path where two
radar beams overlap, and on which more pulses are transmitted.

The high incidence of Ewing's sarcoma on Cape Cod and the temporal
and geographic associations between the PAVE PAWS radar and the
Ewing's sarcoma cases were sufficiently compelling that the
Massachusetts Department of Public Health conducted an
investigation. Part of that investigation involved measurement of
the power flux density of the radar pulses. Measurements were
conducted in 2007 at sites associated with the Ewing's cases, and at
other control sites chosen to have similar elevations and distances
from the radar as the Ewing's cases. No comparison measurements were
made at distances beyond the Ewing's case farthest from the radar, or
at highly populated areas shaded from the radar by the terrain. This
was a fatal design flaw in the measurement program.

The study was also deficient in the analysis of the measurements. It
failed to note that measurements in 2004 were 40-500 times higher
than measurements in 2007 at the same sites. It failed to notice
that the peak measurements at some sites in 2007 were less than
temporal averages in 2004; because of the timing of the pulses, peaks
should be thousands of times greater than temporal averages. The
Massachusetts Department of Public Health lacks the engineering
expertise to analyze and understand the radar measurements.

In any disease cluster there are confounders. There may be
agricultural practices, land use patterns, geological features, or
natural biological organisms unique to Cape Cod which are factors in
this cluster. The cause may be a combination of factors rather than a
single factor.

There remains a need for a diligent and comprehensive
multidisciplinary study of the Cape Cod Ewing's Sarcoma Cluster
involving epidemiology, engineering, and molecular biology. It is
imperative that it be conducted by independent parties who are
unbiased and who are not pressured to defend a particular doctrine,
technology, or organization.

An epidemiologic investigation should begin with a complete and
detailed medical history of these cases designed to identify or
eliminate common factors in the Cape Cod Ewing's Sarcoma Cluster.
Lifestyle patterns should also be identified. There should be a
review of other epidemiologic studies of the higher incidence of
breast cancer and childhood cancer on Cape Cod.

The presence of a unique engineered facility with a history of
environmental impact statements, research investigations,
specification changes, hardware changes and continuing community
questions about its operational safety requires an engineering review
by parties not obliged to defend the technology. A review of peak
power flux density measurements made in 2004 which were not compared
with published specifications, and were not even plotted, is
required. Approximately half of those measurements are traceable to
the maximum possible output of one particular instrument with the
result that the reported values are clipped at levels below the true
values. That renders a larger body of epidemiologic research and
predictions of the intensity of human exposure based on those
measurements of dubious value.

It is also necessary to resolve the statements made to the
Massachusetts Department of Public Health in 2007 regarding the
presence of outside interference in the 2004 measurements which
contradict the assurances given six different times that outside
interference was not a factor in the 2004 measurements. Engineering
analysis supports the statements made in 2004 that the measurements
were indeed from the PAVE PAWS radar and not outside interferers.

Though under-reported due to the clipping error, the peak power flux
density measurements reported in 2004 exceeded the published radar
specifications at 10 of 50 sites measured. At one site 18.5 miles
from the radar, the approximate distance of homes of three Ewing's
sarcoma cases, the radar was 46 times the value predicted by
published specifications, and consistent with the main beam of the
radar. The public has been repeatedly assured that the main beam of
the radar is directed a minimum of three degrees above the horizon at
the radar. This site yielded the strongest radar signal measured in
2004 and 2007.

Engineering analysis can also predict how radar exposure may be
enhanced in metal buildings such as schools, on conducting surfaces
such as salt water beaches, and in the human body itself. Finite
Difference Time Domain analyses to determine how electromagnetic
radiation is absorbed by humans of various sizes has been used to
show that current safety standards may not adequately protect
children. That research should be validated and extended to humans
of various sizes and in various postures such as sitting or the fetal
position.

Molecular biology and biomedical engineering studies can determine if
the PAVE PAWS radiation exploits a weakness leading to chromosomes
breaks linked to Ewing's sarcoma, or if it promotes a migration of
genetic material within the cell and the translocation error leading
to carcinogenesis. The molecular weight and moment of inertia, and
electrical charge and dipole moment of genetic material involved in
the Ewing's translocation must be determined. In combination with
calculations of the electrical field which is present in the body the
response of the genetic material may be determined. If
electromagnetic radiation induces a biologic response, this type of
study has the potential of leading to an etiology for Ewing's sarcoma.

There is a cost to be born in supporting such a thorough and detailed
investigation. However, it must be recognized that the cost of
treating a case of Ewing's sarcoma is often several million dollars.
If a remission is achieved, follow-up medical testing is required for
life. Unfortunately, some cases which are successfully treated
develop other cancers related to the intensive initial treatment. It
is essential that we learn as much about the causes of the Cape Cod
Ewing's Sarcoma Cluster as possible.

End of Message

Friends,

It's Friday, which is why I thought of this today, as I do every Friday.

On Fridays our local journal of record, the Cape Cod Times, replaces its
editorial column with a byline called "Cheers and Jeers."

On December 14, 2007, the Masachusetts Department of Public Health met
with the Ewing's sarcoma families on Cape Cod, which the Times reported.
Apparently the Times didn't tolarate our conerns about the MDPH report,
and our desire to get answers, so they too a slap at our kids.

On December 28, 2007, the "jeerleaders" found a way to dis the cancer
victims
saying:

"But that won't stop cancer victims from blaming invisible
rays or some other hidden danger for triggering their disease. When
illness strikes, it's only human nature to look outside our own
bodies for a cause."


As a matter of fact, these is a one and one-half century old science for
looking outside our bodies for a cause: it's called "epidemiology."

In the hands of someone who cares, and is seeking knowledge,
epidemiology can be a useful tool.  But in the hands of people who use
it over and over and never learn anything, its a waste.

We were outraged, and after 28 years of subscribing to the Times,
including several years seeing to it that our older daughter made her
early morning paper deliveries, we allowed our subscription to expire.
I wrote a blistering letter to the editorial page editor.

The first day we did not recieve the paper was January 24, 2008, the day
Holly died.

Bernie





[Non-text portions of this message have been removed]

Shauna,

I actually prepared this response last night.  My email records seem to
suggest it was sent to a wastebasket instead of this group site.  I
belong to 4 yahoo groups now, and they are all set up differently, and I
haven't figured out all their idiosyncrasies yet.  They are wonderful
tools though.
You point out an interesting problem with data in cancer registries.
People do move, and when they do their cases are often dropped from the
statistics.  There are several reasons this is important.  If you saw
the Red Sox movie (as we call it ) "Fever Pitch" a little boy in a wheel
chair appears singing the national anthem.  His name is Jordan Leandre,
and he lives 1.75 miles from us.  His profile is on the Dana Farber
Cancer Institute-Jimmy Fund Clinic website.  His family moved about 4
miles just after he was born and the Masachusetts Department of Public
Health pointed out that the exposure at his house probably wasn't
relevant.  He was living at the new home on 9-11-01 which I associate
with a temporal cluster of 8 cases within the overal geographic cluster.
One more wrinkle in that one, the old residence was just a couple of
miles from another Ewing's case.   By the way, much of New England
remembers that during pre-game ceremonies at home plate last year for
the annual Jimmy Fund Clinic telethon, Jordan took off and ran the
bases.  The cameras followed. I think this was the first time people
haven't seen him in a wheelchair at Fenway Park!  Holly was interviewed
by the TV sportscasters during the 7th inning.   The other case had some
residency issues too.  Their deed is dated in 2003, but it shows they
were already living there at the time the family bought the house. I
even cautioned the MDPH not to misinterpret this information.  The state
discredited that case too.  I don't remember the complete details of
these two cases, but both families were upset with MDPH for the comments
they made about residency.  See the BSL MDPH.... file I posted for MDPH
comments about residency.   MDPH has computed a standardized incidence
ratio for this cluster as 384 (3.84 times as many cases expected).  I
compute 667, and I've described the calculations I did, and I'm going to
defend my numbers.  In contrast, the famous Woburn Leukemia cluster
documented in the movie "A Civil Action" was 2.67.   There's more.  Some
of the concerned citizens from the upper Cape near the canal had been
told by medical personnel that there were two cases of Ewing;s children
who lived at Otis AFB.  They would have escaped the MA cancer registry
if they were treated at military hospitals, or if they were treated in
nearby Rhode Island.  The MDPH is aware of this report, and said they
will look into it, but the military facilities are not required to
report to the cancer registry, or cooperate with MDPH.   I don't know if
you looked at my files, but I identified an association between the the
1.1MegaWatt PAVE PAWS radar station and the Ewing's cases.  The MDPH
study was described as "fatally flawed" by several epidemiologists.  See
the file "Cancer study triggers debate."   One epidemiologist I
communicate with has identified a cluster of leukemia around PAVE PAWS
and Otis (now decomissioned, sort of) and the Loran station on
Nantucket, and there is a report of  high rates of leukemia around a
similar PAVE PAWS station at Fylingdales in the UK.  The MDPH is
investigating childhood cancer in the upper Cape, even to the point of
conducting interviews.  But those interviews are said to be superficial,
and definitely don't extend to the emsemble of cases in the Mid-Cape
where we live.  There is a 13 mile gap in between.   Shauna, do you
suspectl there has been an excess of cancer around any of the bases
where you have been?   On that note, it's time for dinner.   Thanks for
responding   Bernie
--- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
>
> Bernie,
>
> Thanks for all the info, I'm saving that to reflect on from time to
time. Yes, we were in the Air Force at Keesler AFB in Biloxi, MS. or at
least until Hurricane Katrina wipe out our house which caused the move
to Delaware. I know the hospital has to report us to some cancer
institute but I know they reported it as Delaware when I know from his
leg cramps it was Mississippi.
>
> Expecting Miracles,
> Shauna
> -------------- Original message ----------------------
> From: bjyoung716 no_reply@yahoogroups.com
> >
> > Shauna, and other friends out there in the blogosphere:
> >
> > This has been a busy 24 hours. I'd like to offer some observations
of
> > what's on people's minds.
> >
> > 1) There are confirmed and suspected clusters of Ewing's out there,
and
> > there is little documention in the medical or epidemiologic
literature
> > about them.
> >
> > 2)There are associations between environmental factors and Ewing's,
and
> > between athletic activity and Ewing's, and between skeletal injuries
and
> > Ewing's. The latter two go hand in hand.
> >
> > 3)It is incomprehensible that these rare events are not met with
enough
> > concern to warrant a documention of medical history, lifestyle
history,
> > suspected environmental factors, etc. which may lead to
identification
> > of risk factors or even a cause. Even a solitary case in a remote or
an
> > unpopulated area should be documented for further investigation.
> >
> > Shauna, there are personal and epidemiologic issues surrounding your
> > concerns. There is a cause for each of these cases. We will never
know
> > what that cause is in each case, but the enemy is not ourselves. As
> > Holly's surgeon told her at the initial appointment, this did not
> > happen because you didn't take the garbage out, and it did not
happen
> > because your parents asked you to take the garbage out. And you
didn't
> > miss the daignosis. Holly was given Bextra for tendonitis until the
> > pain was so great she couldn't sleep. She named her Ewing's
> > "tumoritis."
> >
> > There is another potential problem for athletes. They are used to
> > playing through pain, and often ignore pain too long. This is
important
> > for athletic directors, coaches, trainors, and the athletes
themselves.
> > There is a considerable body of literature on discriminating between
> > injury and illness. Everyone in sports needs to pay attention to it.
> >
> > Even if statisticians tell us these are random events, that does not
> > mean that there is not a cause for every case, or that there are not
> > common factors among some cases. Once you identify any common
factor,
> > the next step is one of measurement. If an increase in exposure to a
> > factor leads to an increase in the effect, then that factor is a
cause.
> > This works well in the laboratory where you can control the factors
and
> > measure them as you do in an experiment. We cannot ethically
experiment
> > on human beings. Life is a natural experiment with many factors not
> > under our control. It would help if each of the 250 or so cases
> > diagnosed each year just in the States had a medical, lifestyle, and
> > environmental history to analyze. With the information technology,
> > communications, and computer power available in the 21st century, we
> > should be doing better.
> >
> > A lot of people note skeletal injuries occurred before the onset of
> > Ewing's. This is discounted by the medical community; it's a
doctrine.
> > However, experience shows that many medical doctrines are reversed,
and
> > even re-reversed and reversed again. There are ample examples of
> > associations that have been missed in research studies, and ample
> > examples of bias. Someday I'd like to see the research behind this
> > doctrine, and see it re-evaluated with contemporary data.
> >
> > Shauna, you said you were stationed in Mississippi. Coast Guard, Air
> > Force, Corps of Engineers?
> >
> > Bernie
> >
> >
> > --- In ewingssarcoma@yahoogroups.com, stamplifter@ wrote:
> > >
> > > Marybeth,
> > >
> > > I think alot of the ER diagnosis depends on what kind of doctor
they
> > are, we just weren't lucky enough to get an orthopedic oncology
doctor.
> > JT ended up with almost a gallon of fluid on his lungs and found out
it
> > was Ewings from there. I wish I'd known to ask for a CAT scan (had
no
> > idea), but everyone I know has heard my story and if it gets someone
to
> > a doctor with a CAT scan or MRI sooner than later will help the
guilt
> > that I feel about it going on for so long. I know it wasn't my fault
but
> > I still find myself saying he might still have his leg if this was
> > caught sooner.
> > >
> > > I'm so angry it was mistreated for so long. Where were you
diagnosed?
> > We actually had it while stationed in Mississippi but weren't
diagnosed
> > until we moved to Delaware.
> > >
> > > Expecting Miracles,
> > >
> > > Shauna
> > >
> > > -------------- Original message ----------------------
> > > From: marybeth adkins jazzmbm@
> > > >
> > > > Hi Shauna,
> > > >
> > > > I too am interested in the clusters. I can completely associate
with
> > you on the
> > > > growing pains. That is all I heard for two years on my daughter.
Her
> > pains were
> > > > in her but. I'm telling you, I felt like an idiot for so long
taking
> > her in with
> > > > but pain. But we finally hit the er with a more aggressive
doctor
> > who did a cat
> > > > scan. It wasn't growing pains. It was Ewings Pnet with a tumor
the
> > size of a
> > > > football in an 8 year old little girl.
> > > > Marybeth
> > > > --- On Wed, 8/6/08, stamplifter@ stamplifter@ wrote:
> > > >
> > > > From: stamplifter@ stamplifter@
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@yahoogroups.com
> > > > Date: Wednesday, August 6, 2008, 6:06 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > I have been reading all of this and I'd like to add my 2 cents.
JT
> > broke his leg
> > > > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
> > least two years
> > > > we had him in and out of the ER and were told growing pains. He
was
> > not an
> > > > athlete and not really active, being 6'1" he always complained
that
> > his legs
> > > > hurt from the time he was five or six years old. I really think
the
> > environment
> > > > has alot to do with him getting it. I was told most Ewings
patients
> > find out
> > > > because of a broken bone. I am very interested in the clusters
and
> > more info.
> > > >
> > > > Thanks for sharing,
> > > >
> > > > Shauna Mom to JT
> > > >
> > > > ------------ -- Original message ------------ --------- -
> > > > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > > > Bernie,
> > > > >
> > > > > My son was diagnosed during his first semester at Michigan, my
> > daughter will
> > > > be
> > > > > a sophmore there this fall. Interesting to hear your're an
alumni.
> > Haven't
> > > > yet,
> > > > > but plan to look at the links you sent and do a little
research
> > myself. I,
> > > > too,
> > > > > am quite miffed by the fact that no one ever questioned his
> > medical history to
> > > > > try and trace back to something, if only for the sake of
research.
> > The other
> > > > > boys who were diagnosed were athletes as well. I have also
> > questioned the
> > > > injury
> > > > > aspect. My son broke his wrist while wrestling in high school,
> > although his
> > > > > tumour was on his spine; don't know if theres any correlation.
> > > > >
> > > > > Sharon
> > > > >
> > > > >
> > > > > Sharon Kory
> > > > >
> > > > > Sharon Kory Interiors Inc
> > > > > 29000 Inkster Rd. Suite 120
> > > > > Southfield, MI 48034
> > > > > phone: 248.357.3600 ext 203
> > > > > fax: 248.357.3646
> > > > >
> > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com>
wrote:
> > > > >
> > > > > From: bjyoung716 no_reply@yahoogroup s.com>
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Date: Tuesday, August 5, 2008, 9:27 PM
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Sharon & Fawad
> > > > >
> > > > > This site had been dormant for a month and all of sudden it's
a
> > > > > whirlwind.
> > > > >
> > > > > If you follow the same message I left with Patricia and read
the
> > files I
> > > > > posted, you will get an idea as to how these clusters are
studied
> > and
> > > > > denied through faulty research. I have been working on a list
of
> > > > > exposures which might be factors in Ewing's or any other
suspected
> > > > > cancer excess. I shouldn't have to do this. There are agencies
> > which
> > > > > ought to be at the task. What we see though is a systematic
> > approach at
> > > > > denying community cancer clusters.
> > > > >
> > > > > I also blog with the National Disease Clusters Alliance. It is
a
> > group
> > > > > of activists, families, victims, doctors, nurses, scientists,
and
> > > > > epidemiologists who have become dissatisfied with the status
quo
> > and
> > > > > feel we ought to be able to find causes for these cancer
clusters.
> > > > > Check out:
> > > > >
> > > > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
> > lustersAlliance/
> > > > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
> > lustersAlliance/ >
> > > > >
> > > > > If you go to the "search" window and enter keywords "Cape
> > > > > Cod" or "Ewing's" you will retrieve all the relevant
> > > > > messages. I'm going to alert them of the activity on this
blog.
> > > > >
> > > > > What blows my mind is that three and a half years after my
> > daughter's
> > > > > diagnosis, no one has even asked for her medical history, let
> > alone
> > > > > investigate lifestyle factors or potential environmental
> > exposures! If
> > > > > you don't ask the questions, you don't get the answers.
> > > > >
> > > > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > > > sarcoma." You ought to try it. Try it with any sport. My
> > > > > daughter's sports were volleyball and track, but a football
> > > > > player/wannabee shot putter uncorked a wild shot and smashed
her
> > ankle.
> > > > > The conventional wisdom, probably 75years old, is that
injuries
> > > > > don't lead to Ewing's. But I've seen so much bad research
> > > > > recently, and see so many associations between sports injuries
and
> > > > > Ewing's that I think the source of that doctrine should be
flushed
> > > > > out of the literature and re-examined.
> > > > >
> > > > > I know Bloomfield Hills as a haven for Michigan grads like me
('68
> > &
> > > > > '71). I also used to sail out of Bayview Yacht Club. My first
ski
> > > > > adventure was at Mt. Holly. That was my daughter's name.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory
<sharonlkory@
> > ...>
> > > > > wrote:
> > > > > >
> > > > > > My son, now 26 years old, was diagnosed at age 18 with
Ewings
> > Sarcoma.
> > > > > We live in a suburb of Detroit, called Bloomfield Hills. There
> > were at
> > > > > least three other boys in our general area diagnosed around
the
> > same
> > > > > time with either Ewings Sarcoma or Osteosarcoma, one of them
> > attended
> > > > > the same high school. I have always found this to be quite
> > peculiar, due
> > > > > to the rarity. The possibility of some environmental factor
> > > > > contributing to this disease seems to make sense. My son
received
> > 10
> > > > > months of chemo, radiation and surgery in a wonderful hospital
in
> > our
> > > > > area. We are very fortuneate that he is a healthy survivor. He
too
> > was
> > > > > an athlete, hockey player, wrestler, golfer and was a very
active
> > teen.
> > > > > > I would be interested in anything that would shed some light
on
> > why an
> > > > > otherwise healthy young man, with no family history of cancer
> > could
> > > > > contract this horrible disease.
> > > > > > Best to all of you still struggling and or mourning the loss
of
> > a
> > > > > loved one. Our hearts will always be with you.
> > > > > >
> > > > > > Sharon Kory
> > > > > >
> > > > > > I am very curious
> > > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com
wrote:
> > > > > >
> > > > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
Cluster
> > > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > Patricia
> > > > > >
> > > > > > Maine West High School in DesPlaines, Illinois, had cases of
> > Ewing's
> > > > > > sarcoma in 2003 and 2004 (the latter being a recent
graduate).
> > It's a
> > > > > > big school (5000 or so) just north of O'hare International
> > Airport.
> > > > > > That community has perceived an excess of cancer, and I have
> > seen
> > > > > > contours of incidence that diminish the further you get from
the
> > > > > > airport. To have two cases of such a rare disease so close
> > together
> > > > > > gets your attention, no matter what the epidemiologists say.
> > Your
> > > > > > information is interesting.
> > > > > >
> > > > > > I belong to several yahoo groups, and all are organized
> > differently.
> > > > > It
> > > > > > seems members of this group receive new messages
automatically,
> > so you
> > > > > > don't have to visit the home page (unless you want to
download
> > files
> > > > > or
> > > > > > search for old messages. If you follow this link:
> > > > > >
> > > > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > > > >
> > > > > > and click on the word "Files" you can download the files I
have
> > > > > posted.
> > > > > >
> > > > > > My sympathies to you on the loss of your daughter. I too
lost a
> > > > > > daughter in January just after her 22 birthday. She battled
3
> > years,
> > > > > > and enjoyed much support as she was an active athlete and
played
> > on
> > > > > many
> > > > > > teams.
> > > > > >
> > > > > > If you read my posts, there is an association on Cape Cod
> > between a
> > > > > > unique electromagnetic radiation exposure and Ewing's. But I
> > think
> > > > > > there are statistical confounders, and one (on a worldwide
> > basis) is
> > > > > > contact sports (hockey, football, soccer). I am also
suspicious
> > of
> > > > > > osteochondroma; there seems to be a excess of that disease
which
> > > > > > parallels the Cape Cod Ewing's cluster. After revealing my
> > concerns to
> > > > > > the state health department, a mother with a son who had
Ewing's
> > said
> > > > > > she had another son with osteochondroma!
> > > > > >
> > > > > > Most of our professional epidemiologists are inclined to
> > discredit
> > > > > talk
> > > > > > of clusters. But this is the 21st century, and with a better
> > educated
> > > > > > population, the ability to instantaneously communicate with
one
> > > > > another,
> > > > > > massive information storage and retrieval technology, and
the
> > help of
> > > > > > some friendly epidemiologists, I beleive we may be able to
> > identify
> > > > > risk
> > > > > > factors for Ewing's where none now exist.
> > > > > >
> > > > > > Do you have any idea if the is a common exposure to some
> > environmental
> > > > > > factor in your community or school? Even though I live on
this
> > side of
> > > > > > "the pond," I have seen several stories of Ewing's cases in
the
> > same
> > > > > > geographic area you describe. I'd like to know more about
your
> > > > > > concerns. I don't want to bias your thinking before
revealing
> > some of
> > > > > > the confounding factors that have caught my attention.
> > > > > >
> > > > > > Hope to we hear more from you.
> > > > > >
> > > > > > Bernie
> > > > > >
> > > > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > > > <patriciasmith@ ...> wrote:
> > > > > > >
> > > > > > > Hi
> > > > > > >
> > > > > > > I wonder could you post the information, I live in the
> > republic of
> > > > > > ireland and we have a population of 3500,000million
> > > > > > > yet where I live and near by three teenagers at the same
time
> > were
> > > > > > diagnosed with ewings sarcoma.
> > > > > > > two sat beside one another in the same school.
> > > > > > > my daughter Krystle died of ewings sarcoma at aged 18
years we
> > live
> > > > > 10
> > > > > > miles away.
> > > > > > > I am interested in clusters and I am a member of The bone
> > cancer
> > > > > > research trust www.bonecancerresea rch.org.uk
> > > > > > > I got a lot of data from ireland england scotland and
wales
> > and we
> > > > > > seem to have a lot for a small population.
> > > > > > > there is very little research in this area.
> > > > > > >
> > > > > > > regards
> > > > > > > patricia
> > > > > > > ireland
> > > > > > >
> > > > > > >
> > > > > > > ----- Original Message -----
> > > > > > > From: bjyoung716
> > > > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
Cluster
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > Scott
> > > > > > >
> > > > > > > Thank you for your comments. I have just posted three
files on
> > this
> > > > > > > blog (which I think are visible only to members) which
answer
> > most
> > > > > of
> > > > > > > the points you raise. They are dated and are best read in
> > > > > > chronological
> > > > > > > order; they seem to be listed with most recent on top.
> > > > > > >
> > > > > > > I would only add that diagnosis is often delayed, which is
of
> > > > > > particular
> > > > > > > concern for athletes who are used to playing through pain.
Our
> > > > > medical
> > > > > > > institutions are world class when it comes to confirming a
> > diagnosis
> > > > > > and
> > > > > > > treating the disease. At the local level things are more
> > ordinary.
> > > > > > >
> > > > > > > This cluster is unique to Cape Cod. There does not seem to
be
> > a
> > > > > > > dramatic elevation in Ewing's anywhere else in New
England. It
> > is
> > > > > 67%
> > > > > > > more severe than the Woburn Leukemia cluster documented
the
> > movie "A
> > > > > > > Civil Action."
> > > > > > >
> > > > > > > I don't know if EMR from our high powered radar station is
the
> > > > > cause,
> > > > > > > but there are enough reasons to be concerned, and the
research
> > > > > > > surrounding it has been pathetically poor. If anyone is
still
> > > > > > > interested after reading these files, I have a 23 page
letter
> > of
> > > > > > > comments on a recent Environmental Impact Statement I can
> > post.
> > > > > > >
> > > > > > > Bernie
> > > > > > >
> > > > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
> > Alcott
> > > > > > > scottbernice@ wrote:
> > > > > > > >
> > > > > > > >
> > > > > > > > Hi Bernie,
> > > > > > > >
> > > > > > > > I'm a Ewing's patient and an American living in Belgium
> > (just 10
> > > > > > > million people) and have been anecdotally surprised at the
> > number of
> > > > > > > cases just known to me arising in this small country.
Turns
> > out the
> > > > > > > nephew of a close work colleague also has ewing's, odd. So
I
> > started
> > > > > > > wondering about "clusters" too. After looking into it all,
now
> > I'm
> > > > > not
> > > > > > > so sure about the anecdotal math I was doing.
> > > > > > > >
> > > > > > > > In your case, Ewing's should appear much more often in
the
> > cape
> > > > > > anyway
> > > > > > > versus the general poulation. Are you controlling for
that?
> > Ewing's
> > > > > is
> > > > > > a
> > > > > > > white person's disease (it shows up 9x more often in white
> > people)
> > > > > and
> > > > > > > the cape has 80% fewer "non-whites" then the general
> > population.
> > > > > > Ewing's
> > > > > > > overwhelmingly clusters in teens 15-19. I don't know if
the
> > > > > incidents
> > > > > > > you count on the cape include the summer/second home
> > population
> > > > > which
> > > > > > > may statistically over-index heavily on families with kids
> > versus
> > > > > the
> > > > > > > general population? Last, I've read that Ewing's is often
> > discovered
> > > > > > > "more" in places with access to top teaching hospitals and
> > places
> > > > > that
> > > > > > > do great pathology while other locations fail to
accurately
> > > > > > subclassify
> > > > > > > tumors as Ewings (they think they are just general
sarcomas or
> > > > > > > osteo-sarcoma, etc.). The cape has access to some of the
> > finest
> > > > > > doctors,
> > > > > > > institutions and teaching hospitals in the world. Maybe
kids
> > who get
> > > > > > > painful lumps on the cape get to Boston and correctly
> > diagnosed in
> > > > > > that
> > > > > > > area more than kids in other places? I don't know. I just
> > think it's
> > > > > > > hard to control for all of this and accurately assess
things.
> > > > > Ewing's
> > > > > > is
> > > > > > > so small and has so many correlations (age, race,
diagnostic
> > > > > variance)
> > > > > > > that there is huge statistical "standard error" in the
data.
> > Given
> > > > > all
> > > > > > > that, I lost confidence in my ability to extrapolate the
> > meaning of
> > > > > > > variance from 10 cases when there should have 4. Numbers
are
> > just
> > > > > too
> > > > > > > small. In my case, Belgium is VERY white and it's a world
> > leader in
> > > > > > > analysis and pathology. I'm not so sure about anything any
> > more!
> > > > > > > >
> > > > > > > > Scott
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
> > Cluster
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
> > sarcoma with
> > > > > a
> > > > > > > standardized incidence ratio of 3.84 (Massachusetts
Department
> > of
> > > > > > Public
> > > > > > > Health figure)or 6.67 (my figure). We should see one case
> > every 6.7
> > > > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in
2004,
> > and
> > > > > one
> > > > > > in
> > > > > > > 2005. There are cses in 1996 and 1996. There are also
adult
> > cases. A
> > > > > > > pair were diagnosed the same day; the 2 in 2004 the same
> > month. A
> > > > > pair
> > > > > > > are 1.75 miles apart; another pair 1/4 mile apart. There
is an
> > > > > > ensemble
> > > > > > > of 3 cases in the Mid-Cape, but most cases are from the
Upper
> > Cape.
> > > > > > > THere is a 13 mile gap between these two ensembles.I am
> > suspicious
> > > > > of
> > > > > > a
> > > > > > > particularly high incidence in athletes or athletically
active
> > > > > > > individuals, although I recognize we are becoming a more
> > active
> > > > > > > society.Anyone have any observations or concerns to offer
to
> > this
> > > > > > > discussion?Bernie
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > > [Non-text portions of this message have been removed]
> > > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > __________ Information from ESET NOD32 Antivirus, version
of
> > virus
> > > > > > signature database 3329 (20080805) __________
> > > > > > >
> > > > > > > The message was checked by ESET NOD32 Antivirus.
> > > > > > >
> > > > > > > http://www.eset. com
> > > > > > >
> > > > > > >
> > > > > > > [Non-text portions of this message have been removed]
> > > > > > >
> > > > > >
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>



[Non-text portions of this message have been removed]

You're really cute. I wanna get to know you. Here's my profile with many photos
Reach me here.
http://mfertgh.topcities.com/photos.htm

Teresa,

That is what makes me so mad.  I took JT to the ER on five different occassions
all we EVER got was an xray which should a broken bone that healed itself, of
course I said he did break it but lower in the leg.  Know one ever took it a
step further even after I told them how often we were there for the same thing. 
We also had it move to our lungs by the time it was found the liver, and the
groin area.  So far all the scans show are scar tissue.  We just finished the
regular 14 rounds in June and had high dose with stem cell recovery on the 17th
of July.

Expecting Miracles,
Shauna
  -------------- Original message ----------------------
From: teresa alvarez <alvteresa@...>
> My son Mike was a high school athlete who played football. When he was a
senior
> he began having pain in his foot-he thought it was related with his running
and
> football. When he graduated he continued to work out and began college. Within
2
> months his foot began to swell and was diagnosed with ewings at Doernbacher
> Hospital in Portland Oregon. Mike went to general physican for the pain and
> swelling for about 2 months before they gave him a CAT scan where they found
the
> ewings. By this time it had moved to his lungs.I am also interested in studies
> on clusters
>
> Teresa Alvarez
> Klamath Falls Oregon
>
> --- On Thu, 8/7/08, marybeth adkins <jazzmbm@...> wrote:
>
> From: marybeth adkins <jazzmbm@...>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Thursday, August 7, 2008, 5:34 AM
>
>
>
>
>
>
> Hi Shauna,
>
> We were diagnosed at St. Jude Childrens Research Hospital after our local ER
> found the tumor, we were sent there immediately. I remind myself that it
wasn't
> my fault either but it is so frustrating. I knew something wasn't right. One
> doctor actually scolded me two weeks before her diagnosis. I took her to ER
for
> constipation. The x-ray showed constipation and he wanted to know why I didn't
> know when she had had her last bowel movement. She is eight years old she
> doesn't exactly need me holding her hand. I just look back at the whole
> nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
> now!
>
> Marybeth
>
> --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net> wrote:
>
> From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Wednesday, August 6, 2008, 9:25 PM
>
> Marybeth,
>
> I think alot of the ER diagnosis depends on what kind of doctor they are, we
> just weren't lucky enough to get an orthopedic oncology doctor. JT ended up
with
> almost a gallon of fluid on his lungs and found out it was Ewings from there.
I
> wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
> heard my story and if it gets someone to a doctor with a CAT scan or MRI
sooner
> than later will help the guilt that I feel about it going on for so long. I
know
> it wasn't my fault but I still find myself saying he might still have his leg
if
> this was caught sooner.
>
> I'm so angry it was mistreated for so long. Where were you diagnosed? We
> actually had it while stationed in Mississippi but weren't diagnosed until we
> moved to Delaware.
>
> Expecting Miracles,
>
> Shauna
>
> ------------ -- Original message ------------ --------- -
> From: marybeth adkins <jazzmbm@yahoo. com>
> >
> > Hi Shauna,
> >
> > I too am interested in the clusters. I can completely associate with you on
> the
> > growing pains. That is all I heard for two years on my daughter. Her pains
> were
> > in her but. I'm telling you, I felt like an idiot for so long taking her in
> with
> > but pain. But we finally hit the er with a more aggressive doctor who did a
> cat
> > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> > football in an 8 year old little girl.
> > Marybeth
> > --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net>
wrote:
> >
> > From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Wednesday, August 6, 2008, 6:06 PM
> >
> >
> >
> >
> >
> >
> > I have been reading all of this and I'd like to add my 2 cents. JT broke his
> leg
> > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
> years
> > we had him in and out of the ER and were told growing pains. He was not an
> > athlete and not really active, being 6'1" he always complained that his legs
> > hurt from the time he was five or six years old. I really think the
> environment
> > has alot to do with him getting it. I was told most Ewings patients find out
> > because of a broken bone. I am very interested in the clusters and more
info.
> >
> > Thanks for sharing,
> >
> > Shauna Mom to JT
> >
> > ------------ -- Original message ------------ --------- -
> > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > Bernie,
> > >
> > > My son was diagnosed during his first semester at Michigan, my daughter
will
> > be
> > > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> > yet,
> > > but plan to look at the links you sent and do a little research myself. I,
> > too,
> > > am quite miffed by the fact that no one ever questioned his medical
history
> to
> > > try and trace back to something, if only for the sake of research. The
other
> > > boys who were diagnosed were athletes as well. I have also questioned the
> > injury
> > > aspect. My son broke his wrist while wrestling in high school, although
his
> > > tumour was on his spine; don't know if theres any correlation.
> > >
> > > Sharon
> > >
> > >
> > > Sharon Kory
> > >
> > > Sharon Kory Interiors Inc
> > > 29000 Inkster Rd. Suite 120
> > > Southfield, MI 48034
> > > phone: 248.357.3600 ext 203
> > > fax: 248.357.3646
> > >
> > > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
> > >
> > > From: bjyoung716 <no_reply@yahoogrou p s.com>
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 9:27 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Sharon & Fawad
> > >
> > > This site had been dormant for a month and all of sudden it's a
> > > whirlwind.
> > >
> > > If you follow the same message I left with Patricia and read the files I
> > > posted, you will get an idea as to how these clusters are studied and
> > > denied through faulty research. I have been working on a list of
> > > exposures which might be factors in Ewing's or any other suspected
> > > cancer excess. I shouldn't have to do this. There are agencies which
> > > ought to be at the task. What we see though is a systematic approach at
> > > denying community cancer clusters.
> > >
> > > I also blog with the National Disease Clusters Alliance. It is a group
> > > of activists, families, victims, doctors, nurses, scientists, and
> > > epidemiologists who have become dissatisfied with the status quo and
> > > feel we ought to be able to find causes for these cancer clusters.
> > > Check out:
> > >
> > > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> > >
> > > If you go to the "search" window and enter keywords "Cape
> > > Cod" or "Ewing's" you will retrieve all the relevant
> > > messages. I'm going to alert them of the activity on this blog.
> > >
> > > What blows my mind is that three and a half years after my daughter's
> > > diagnosis, no one has even asked for her medical history, let alone
> > > investigate lifestyle factors or potential environmental exposures! If
> > > you don't ask the questions, you don't get the answers.
> > >
> > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > sarcoma." You ought to try it. Try it with any sport. My
> > > daughter's sports were volleyball and track, but a football
> > > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > > The conventional wisdom, probably 75years old, is that injuries
> > > don't lead to Ewing's. But I've seen so much bad research
> > > recently, and see so many associations between sports injuries and
> > > Ewing's that I think the source of that doctrine should be flushed
> > > out of the literature and re-examined.
> > >
> > > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > adventure was at Mt. Holly. That was my daughter's name.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > > wrote:
> > > >
> > > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > > least three other boys in our general area diagnosed around the same
> > > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > > the same high school. I have always found this to be quite peculiar, due
> > > to the rarity. The possibility of some environmental factor
> > > contributing to this disease seems to make sense. My son received 10
> > > months of chemo, radiation and surgery in a wonderful hospital in our
> > > area. We are very fortuneate that he is a healthy survivor. He too was
> > > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > > I would be interested in anything that would shed some light on why an
> > > otherwise healthy young man, with no family history of cancer could
> > > contract this horrible disease.
> > > > Best to all of you still struggling and or mourning the loss of a
> > > loved one. Our hearts will always be with you.
> > > >
> > > > Sharon Kory
> > > >
> > > > I am very curious
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Patricia
> > > >
> > > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > > big school (5000 or so) just north of O'hare International Airport.
> > > > That community has perceived an excess of cancer, and I have seen
> > > > contours of incidence that diminish the further you get from the
> > > > airport. To have two cases of such a rare disease so close together
> > > > gets your attention, no matter what the epidemiologists say. Your
> > > > information is interesting.
> > > >
> > > > I belong to several yahoo groups, and all are organized differently.
> > > It
> > > > seems members of this group receive new messages automatically, so you
> > > > don't have to visit the home page (unless you want to download files
> > > or
> > > > search for old messages. If you follow this link:
> > > >
> > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > >
> > > > and click on the word "Files" you can download the files I have
> > > posted.
> > > >
> > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > daughter in January just after her 22 birthday. She battled 3 years,
> > > > and enjoyed much support as she was an active athlete and played on
> > > many
> > > > teams.
> > > >
> > > > If you read my posts, there is an association on Cape Cod between a
> > > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > > there are statistical confounders, and one (on a worldwide basis) is
> > > > contact sports (hockey, football, soccer). I am also suspicious of
> > > > osteochondroma; there seems to be a excess of that disease which
> > > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > > the state health department, a mother with a son who had Ewing's said
> > > > she had another son with osteochondroma!
> > > >
> > > > Most of our professional epidemiologists are inclined to discredit
> > > talk
> > > > of clusters. But this is the 21st century, and with a better educated
> > > > population, the ability to instantaneously communicate with one
> > > another,
> > > > massive information storage and retrieval technology, and the help of
> > > > some friendly epidemiologists, I beleive we may be able to identify
> > > risk
> > > > factors for Ewing's where none now exist.
> > > >
> > > > Do you have any idea if the is a common exposure to some environmental
> > > > factor in your community or school? Even though I live on this side of
> > > > "the pond," I have seen several stories of Ewing's cases in the same
> > > > geographic area you describe. I'd like to know more about your
> > > > concerns. I don't want to bias your thinking before revealing some of
> > > > the confounding factors that have caught my attention.
> > > >
> > > > Hope to we hear more from you.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > <patriciasmith@ ...> wrote:
> > > > >
> > > > > Hi
> > > > >
> > > > > I wonder could you post the information, I live in the republic of
> > > > ireland and we have a population of 3500,000million
> > > > > yet where I live and near by three teenagers at the same time were
> > > > diagnosed with ewings sarcoma.
> > > > > two sat beside one another in the same school.
> > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > > 10
> > > > miles away.
> > > > > I am interested in clusters and I am a member of The bone cancer
> > > > research trust www.bonecancerresea rch.org.uk
> > > > > I got a lot of data from ireland england scotland and wales and we
> > > > seem to have a lot for a small population.
> > > > > there is very little research in this area.
> > > > >
> > > > > regards
> > > > > patricia
> > > > > ireland
> > > > >
> > > > >
> > > > > ----- Original Message -----
> > > > > From: bjyoung716
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > > Scott
> > > > >
> > > > > Thank you for your comments. I have just posted three files on this
> > > > > blog (which I think are visible only to members) which answer most
> > > of
> > > > > the points you raise. They are dated and are best read in
> > > > chronological
> > > > > order; they seem to be listed with most recent on top.
> > > > >
> > > > > I would only add that diagnosis is often delayed, which is of
> > > > particular
> > > > > concern for athletes who are used to playing through pain. Our
> > > medical
> > > > > institutions are world class when it comes to confirming a diagnosis
> > > > and
> > > > > treating the disease. At the local level things are more ordinary.
> > > > >
> > > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > > 67%
> > > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > > Civil Action."
> > > > >
> > > > > I don't know if EMR from our high powered radar station is the
> > > cause,
> > > > > but there are enough reasons to be concerned, and the research
> > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > interested after reading these files, I have a 23 page letter of
> > > > > comments on a recent Environmental Impact Statement I can post.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > > scottbernice@ wrote:
> > > > > >
> > > > > >
> > > > > > Hi Bernie,
> > > > > >
> > > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > > million people) and have been anecdotally surprised at the number of
> > > > > cases just known to me arising in this small country. Turns out the
> > > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > > wondering about "clusters" too. After looking into it all, now I'm
> > > not
> > > > > so sure about the anecdotal math I was doing.
> > > > > >
> > > > > > In your case, Ewing's should appear much more often in the cape
> > > > anyway
> > > > > versus the general poulation. Are you controlling for that? Ewing's
> > > is
> > > > a
> > > > > white person's disease (it shows up 9x more often in white people)
> > > and
> > > > > the cape has 80% fewer "non-whites" then the general population.
> > > > Ewing's
> > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > incidents
> > > > > you count on the cape include the summer/second home population
> > > which
> > > > > may statistically over-index heavily on families with kids versus
> > > the
> > > > > general population? Last, I've read that Ewing's is often discovered
> > > > > "more" in places with access to top teaching hospitals and places
> > > that
> > > > > do great pathology while other locations fail to accurately
> > > > subclassify
> > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > > doctors,
> > > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > > that
> > > > > area more than kids in other places? I don't know. I just think it's
> > > > > hard to control for all of this and accurately assess things.
> > > Ewing's
> > > > is
> > > > > so small and has so many correlations (age, race, diagnostic
> > > variance)
> > > > > that there is huge statistical "standard error" in the data. Given
> > > all
> > > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > > variance from 10 cases when there should have 4. Numbers are just
> > > too
> > > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > > analysis and pathology. I'm not so sure about anything any more!
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > > a
> > > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > > Public
> > > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > > one
> > > > in
> > > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > > pair
> > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > ensemble
> > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > > of
> > > > a
> > > > > particularly high incidence in athletes or athletically active
> > > > > individuals, although I recognize we are becoming a more active
> > > > > society.Anyone have any observations or concerns to offer to this
> > > > > discussion?Bernie
> > > > > >
> > > > > >
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> > > > >
> > > > >
> > > > >
> > > > > __________ Information from ESET NOD32 Antivirus, version of virus
> > > > signature database 3329 (20080805) __________
> > > > >
> > > > > The message was checked by ESET NOD32 Antivirus.
> > > > >
> > > > > http://www.eset. com
> > > > >
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Bernie,

Thanks for all the info, I'm saving that to reflect on from time to time.  Yes,
we were in the Air Force at Keesler AFB in Biloxi, MS. or at least until
Hurricane Katrina wipe out our house which caused the move to Delaware.  I know
the hospital has to report us to some cancer institute but I know they reported
it as Delaware when I know from his leg cramps it was Mississippi.

Expecting Miracles,
Shauna
  -------------- Original message ----------------------
From: bjyoung716 <no_reply@yahoogroups.com>
>
> Shauna, and other friends out there in the blogosphere:
>
> This has been a busy 24 hours.  I'd like to offer some observations of
> what's on people's minds.
>
> 1) There are confirmed and suspected clusters of Ewing's out there, and
> there is little documention in the medical or epidemiologic literature
> about them.
>
> 2)There are associations between environmental factors and Ewing's, and
> between athletic activity and Ewing's, and between skeletal injuries and
> Ewing's.  The latter two go hand in hand.
>
> 3)It is incomprehensible that these rare events are not met with enough
> concern to warrant a documention of medical history, lifestyle history,
> suspected environmental factors, etc. which may lead to identification
> of risk factors or even a cause.  Even a solitary case in a remote or an
> unpopulated area should be documented for further investigation.
>
> Shauna, there are personal and epidemiologic issues surrounding your
> concerns.  There is a cause for each of these cases.  We will never know
> what that cause is in each case, but the enemy is not ourselves.  As
> Holly's surgeon told her at the initial appointment, this did  not
> happen because you didn't take the garbage out, and it did not happen
> because your parents asked you to take the garbage out.  And you didn't
> miss the daignosis.  Holly was given Bextra for tendonitis until the
> pain was so great she couldn't sleep.  She named her Ewing's
> "tumoritis."
>
> There is another potential problem for athletes.  They are used to
> playing through pain, and often ignore pain too long.  This is important
> for athletic directors, coaches, trainors, and the athletes themselves.
> There is a considerable body of literature on discriminating between
> injury and illness.  Everyone in sports needs to pay attention to it.
>
> Even if statisticians tell us these are random events, that does not
> mean that there is not a cause for every case, or that there are not
> common factors among some cases.  Once you identify any common factor,
> the next step is one of measurement.  If an increase in exposure to a
> factor leads to an increase in the effect, then that factor is a cause.
> This works well in the laboratory where you can control the factors and
> measure them as you do in an experiment.  We cannot ethically experiment
> on human beings.  Life is a natural experiment with many factors not
> under our control.  It would help if each of the 250 or so cases
> diagnosed each year just in the States had a medical, lifestyle, and
> environmental history to analyze.  With the information technology,
> communications, and computer power available in the 21st century, we
> should be doing better.
>
> A lot of people note skeletal injuries occurred before the onset of
> Ewing's.  This is discounted by the medical community; it's a doctrine.
> However, experience shows that many medical doctrines are reversed, and
> even re-reversed and reversed again.  There are ample examples of
> associations that have been missed in research studies, and ample
> examples of bias.  Someday I'd like to see the research behind this
> doctrine, and see it re-evaluated with contemporary data.
>
> Shauna, you said you were stationed in Mississippi.  Coast Guard, Air
> Force, Corps of Engineers?
>
> Bernie
>
>
> --- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
> >
> > Marybeth,
> >
> > I think alot of the ER diagnosis depends on what kind of doctor they
> are, we just weren't lucky enough to get an orthopedic oncology doctor.
> JT ended up with almost a gallon of fluid on his lungs and found out it
> was Ewings from there. I wish I'd known to ask for a CAT scan (had no
> idea), but everyone I know has heard my story and if it gets someone to
> a doctor with a CAT scan or MRI sooner than later will help the guilt
> that I feel about it going on for so long. I know it wasn't my fault but
> I still find myself saying he might still have his leg if this was
> caught sooner.
> >
> > I'm so angry it was mistreated for so long. Where were you diagnosed?
> We actually had it while stationed in Mississippi but weren't diagnosed
> until we moved to Delaware.
> >
> > Expecting Miracles,
> >
> > Shauna
> >
> > -------------- Original message ----------------------
> > From: marybeth adkins jazzmbm@...
> > >
> > > Hi Shauna,
> > >
> > > I too am interested in the clusters. I can completely associate with
> you on the
> > > growing pains. That is all I heard for two years on my daughter. Her
> pains were
> > > in her but. I'm telling you, I felt like an idiot for so long taking
> her in with
> > > but pain. But we finally hit the er with a more aggressive doctor
> who did a cat
> > > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the
> size of a
> > > football in an 8 year old little girl.
> > > Marybeth
> > > --- On Wed, 8/6/08, stamplifter@... stamplifter@... wrote:
> > >
> > > From: stamplifter@... stamplifter@...
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@yahoogroups.com
> > > Date: Wednesday, August 6, 2008, 6:06 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I have been reading all of this and I'd like to add my 2 cents. JT
> broke his leg
> > > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
> least two years
> > > we had him in and out of the ER and were told growing pains. He was
> not an
> > > athlete and not really active, being 6'1" he always complained that
> his legs
> > > hurt from the time he was five or six years old. I really think the
> environment
> > > has alot to do with him getting it. I was told most Ewings patients
> find out
> > > because of a broken bone. I am very interested in the clusters and
> more info.
> > >
> > > Thanks for sharing,
> > >
> > > Shauna Mom to JT
> > >
> > > ------------ -- Original message ------------ --------- -
> > > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > > Bernie,
> > > >
> > > > My son was diagnosed during his first semester at Michigan, my
> daughter will
> > > be
> > > > a sophmore there this fall. Interesting to hear your're an alumni.
> Haven't
> > > yet,
> > > > but plan to look at the links you sent and do a little research
> myself. I,
> > > too,
> > > > am quite miffed by the fact that no one ever questioned his
> medical history to
> > > > try and trace back to something, if only for the sake of research.
> The other
> > > > boys who were diagnosed were athletes as well. I have also
> questioned the
> > > injury
> > > > aspect. My son broke his wrist while wrestling in high school,
> although his
> > > > tumour was on his spine; don't know if theres any correlation.
> > > >
> > > > Sharon
> > > >
> > > >
> > > > Sharon Kory
> > > >
> > > > Sharon Kory Interiors Inc
> > > > 29000 Inkster Rd. Suite 120
> > > > Southfield, MI 48034
> > > > phone: 248.357.3600 ext 203
> > > > fax: 248.357.3646
> > > >
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com> wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com>
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 9:27 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Sharon & Fawad
> > > >
> > > > This site had been dormant for a month and all of sudden it's a
> > > > whirlwind.
> > > >
> > > > If you follow the same message I left with Patricia and read the
> files I
> > > > posted, you will get an idea as to how these clusters are studied
> and
> > > > denied through faulty research. I have been working on a list of
> > > > exposures which might be factors in Ewing's or any other suspected
> > > > cancer excess. I shouldn't have to do this. There are agencies
> which
> > > > ought to be at the task. What we see though is a systematic
> approach at
> > > > denying community cancer clusters.
> > > >
> > > > I also blog with the National Disease Clusters Alliance. It is a
> group
> > > > of activists, families, victims, doctors, nurses, scientists, and
> > > > epidemiologists who have become dissatisfied with the status quo
> and
> > > > feel we ought to be able to find causes for these cancer clusters.
> > > > Check out:
> > > >
> > > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/
> > > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/ >
> > > >
> > > > If you go to the "search" window and enter keywords "Cape
> > > > Cod" or "Ewing's" you will retrieve all the relevant
> > > > messages. I'm going to alert them of the activity on this blog.
> > > >
> > > > What blows my mind is that three and a half years after my
> daughter's
> > > > diagnosis, no one has even asked for her medical history, let
> alone
> > > > investigate lifestyle factors or potential environmental
> exposures! If
> > > > you don't ask the questions, you don't get the answers.
> > > >
> > > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > > sarcoma." You ought to try it. Try it with any sport. My
> > > > daughter's sports were volleyball and track, but a football
> > > > player/wannabee shot putter uncorked a wild shot and smashed her
> ankle.
> > > > The conventional wisdom, probably 75years old, is that injuries
> > > > don't lead to Ewing's. But I've seen so much bad research
> > > > recently, and see so many associations between sports injuries and
> > > > Ewing's that I think the source of that doctrine should be flushed
> > > > out of the literature and re-examined.
> > > >
> > > > I know Bloomfield Hills as a haven for Michigan grads like me ('68
> &
> > > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > > adventure was at Mt. Holly. That was my daughter's name.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@
> ...>
> > > > wrote:
> > > > >
> > > > > My son, now 26 years old, was diagnosed at age 18 with Ewings
> Sarcoma.
> > > > We live in a suburb of Detroit, called Bloomfield Hills. There
> were at
> > > > least three other boys in our general area diagnosed around the
> same
> > > > time with either Ewings Sarcoma or Osteosarcoma, one of them
> attended
> > > > the same high school. I have always found this to be quite
> peculiar, due
> > > > to the rarity. The possibility of some environmental factor
> > > > contributing to this disease seems to make sense. My son received
> 10
> > > > months of chemo, radiation and surgery in a wonderful hospital in
> our
> > > > area. We are very fortuneate that he is a healthy survivor. He too
> was
> > > > an athlete, hockey player, wrestler, golfer and was a very active
> teen.
> > > > > I would be interested in anything that would shed some light on
> why an
> > > > otherwise healthy young man, with no family history of cancer
> could
> > > > contract this horrible disease.
> > > > > Best to all of you still struggling and or mourning the loss of
> a
> > > > loved one. Our hearts will always be with you.
> > > > >
> > > > > Sharon Kory
> > > > >
> > > > > I am very curious
> > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > > >
> > > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Patricia
> > > > >
> > > > > Maine West High School in DesPlaines, Illinois, had cases of
> Ewing's
> > > > > sarcoma in 2003 and 2004 (the latter being a recent graduate).
> It's a
> > > > > big school (5000 or so) just north of O'hare International
> Airport.
> > > > > That community has perceived an excess of cancer, and I have
> seen
> > > > > contours of incidence that diminish the further you get from the
> > > > > airport. To have two cases of such a rare disease so close
> together
> > > > > gets your attention, no matter what the epidemiologists say.
> Your
> > > > > information is interesting.
> > > > >
> > > > > I belong to several yahoo groups, and all are organized
> differently.
> > > > It
> > > > > seems members of this group receive new messages automatically,
> so you
> > > > > don't have to visit the home page (unless you want to download
> files
> > > > or
> > > > > search for old messages. If you follow this link:
> > > > >
> > > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > > >
> > > > > and click on the word "Files" you can download the files I have
> > > > posted.
> > > > >
> > > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > > daughter in January just after her 22 birthday. She battled 3
> years,
> > > > > and enjoyed much support as she was an active athlete and played
> on
> > > > many
> > > > > teams.
> > > > >
> > > > > If you read my posts, there is an association on Cape Cod
> between a
> > > > > unique electromagnetic radiation exposure and Ewing's. But I
> think
> > > > > there are statistical confounders, and one (on a worldwide
> basis) is
> > > > > contact sports (hockey, football, soccer). I am also suspicious
> of
> > > > > osteochondroma; there seems to be a excess of that disease which
> > > > > parallels the Cape Cod Ewing's cluster. After revealing my
> concerns to
> > > > > the state health department, a mother with a son who had Ewing's
> said
> > > > > she had another son with osteochondroma!
> > > > >
> > > > > Most of our professional epidemiologists are inclined to
> discredit
> > > > talk
> > > > > of clusters. But this is the 21st century, and with a better
> educated
> > > > > population, the ability to instantaneously communicate with one
> > > > another,
> > > > > massive information storage and retrieval technology, and the
> help of
> > > > > some friendly epidemiologists, I beleive we may be able to
> identify
> > > > risk
> > > > > factors for Ewing's where none now exist.
> > > > >
> > > > > Do you have any idea if the is a common exposure to some
> environmental
> > > > > factor in your community or school? Even though I live on this
> side of
> > > > > "the pond," I have seen several stories of Ewing's cases in the
> same
> > > > > geographic area you describe. I'd like to know more about your
> > > > > concerns. I don't want to bias your thinking before revealing
> some of
> > > > > the confounding factors that have caught my attention.
> > > > >
> > > > > Hope to we hear more from you.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > > <patriciasmith@ ...> wrote:
> > > > > >
> > > > > > Hi
> > > > > >
> > > > > > I wonder could you post the information, I live in the
> republic of
> > > > > ireland and we have a population of 3500,000million
> > > > > > yet where I live and near by three teenagers at the same time
> were
> > > > > diagnosed with ewings sarcoma.
> > > > > > two sat beside one another in the same school.
> > > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we
> live
> > > > 10
> > > > > miles away.
> > > > > > I am interested in clusters and I am a member of The bone
> cancer
> > > > > research trust www.bonecancerresea rch.org.uk
> > > > > > I got a lot of data from ireland england scotland and wales
> and we
> > > > > seem to have a lot for a small population.
> > > > > > there is very little research in this area.
> > > > > >
> > > > > > regards
> > > > > > patricia
> > > > > > ireland
> > > > > >
> > > > > >
> > > > > > ----- Original Message -----
> > > > > > From: bjyoung716
> > > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > > Thank you for your comments. I have just posted three files on
> this
> > > > > > blog (which I think are visible only to members) which answer
> most
> > > > of
> > > > > > the points you raise. They are dated and are best read in
> > > > > chronological
> > > > > > order; they seem to be listed with most recent on top.
> > > > > >
> > > > > > I would only add that diagnosis is often delayed, which is of
> > > > > particular
> > > > > > concern for athletes who are used to playing through pain. Our
> > > > medical
> > > > > > institutions are world class when it comes to confirming a
> diagnosis
> > > > > and
> > > > > > treating the disease. At the local level things are more
> ordinary.
> > > > > >
> > > > > > This cluster is unique to Cape Cod. There does not seem to be
> a
> > > > > > dramatic elevation in Ewing's anywhere else in New England. It
> is
> > > > 67%
> > > > > > more severe than the Woburn Leukemia cluster documented the
> movie "A
> > > > > > Civil Action."
> > > > > >
> > > > > > I don't know if EMR from our high powered radar station is the
> > > > cause,
> > > > > > but there are enough reasons to be concerned, and the research
> > > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > > interested after reading these files, I have a 23 page letter
> of
> > > > > > comments on a recent Environmental Impact Statement I can
> post.
> > > > > >
> > > > > > Bernie
> > > > > >
> > > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
> Alcott
> > > > > > scottbernice@ wrote:
> > > > > > >
> > > > > > >
> > > > > > > Hi Bernie,
> > > > > > >
> > > > > > > I'm a Ewing's patient and an American living in Belgium
> (just 10
> > > > > > million people) and have been anecdotally surprised at the
> number of
> > > > > > cases just known to me arising in this small country. Turns
> out the
> > > > > > nephew of a close work colleague also has ewing's, odd. So I
> started
> > > > > > wondering about "clusters" too. After looking into it all, now
> I'm
> > > > not
> > > > > > so sure about the anecdotal math I was doing.
> > > > > > >
> > > > > > > In your case, Ewing's should appear much more often in the
> cape
> > > > > anyway
> > > > > > versus the general poulation. Are you controlling for that?
> Ewing's
> > > > is
> > > > > a
> > > > > > white person's disease (it shows up 9x more often in white
> people)
> > > > and
> > > > > > the cape has 80% fewer "non-whites" then the general
> population.
> > > > > Ewing's
> > > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > > incidents
> > > > > > you count on the cape include the summer/second home
> population
> > > > which
> > > > > > may statistically over-index heavily on families with kids
> versus
> > > > the
> > > > > > general population? Last, I've read that Ewing's is often
> discovered
> > > > > > "more" in places with access to top teaching hospitals and
> places
> > > > that
> > > > > > do great pathology while other locations fail to accurately
> > > > > subclassify
> > > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > > osteo-sarcoma, etc.). The cape has access to some of the
> finest
> > > > > doctors,
> > > > > > institutions and teaching hospitals in the world. Maybe kids
> who get
> > > > > > painful lumps on the cape get to Boston and correctly
> diagnosed in
> > > > > that
> > > > > > area more than kids in other places? I don't know. I just
> think it's
> > > > > > hard to control for all of this and accurately assess things.
> > > > Ewing's
> > > > > is
> > > > > > so small and has so many correlations (age, race, diagnostic
> > > > variance)
> > > > > > that there is huge statistical "standard error" in the data.
> Given
> > > > all
> > > > > > that, I lost confidence in my ability to extrapolate the
> meaning of
> > > > > > variance from 10 cases when there should have 4. Numbers are
> just
> > > > too
> > > > > > small. In my case, Belgium is VERY white and it's a world
> leader in
> > > > > > analysis and pathology. I'm not so sure about anything any
> more!
> > > > > > >
> > > > > > > Scott
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
> Cluster
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
> sarcoma with
> > > > a
> > > > > > standardized incidence ratio of 3.84 (Massachusetts Department
> of
> > > > > Public
> > > > > > Health figure)or 6.67 (my figure). We should see one case
> every 6.7
> > > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004,
> and
> > > > one
> > > > > in
> > > > > > 2005. There are cses in 1996 and 1996. There are also adult
> cases. A
> > > > > > pair were diagnosed the same day; the 2 in 2004 the same
> month. A
> > > > pair
> > > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > > ensemble
> > > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper
> Cape.
> > > > > > THere is a 13 mile gap between these two ensembles.I am
> suspicious
> > > > of
> > > > > a
> > > > > > particularly high incidence in athletes or athletically active
> > > > > > individuals, although I recognize we are becoming a more
> active
> > > > > > society.Anyone have any observations or concerns to offer to
> this
> > > > > > discussion?Bernie
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > [Non-text portions of this message have been removed]
> > > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > __________ Information from ESET NOD32 Antivirus, version of
> virus
> > > > > signature database 3329 (20080805) __________
> > > > > >
> > > > > > The message was checked by ESET NOD32 Antivirus.
> > > > > >
> > > > > > http://www.eset. com
> > > > > >
> > > > > >
> > > > > > [Non-text portions of this message have been removed]
> > > > > >
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>




[Non-text portions of this message have been removed]

Marybeth,

I had to laugh at your posting... in the beginning I didn't know his bowel
activity but I sure do now!

Have a great Day and thanks for making me smile,

Shauna
  -------------- Original message ----------------------
From: marybeth adkins <jazzmbm@...>
> Hi Shauna,
>
> We were diagnosed at St. Jude Childrens Research Hospital after our local ER
> found the tumor, we were sent there immediately. I remind myself that it
wasn't
> my fault either but it is so frustrating. I knew something wasn't right. One
> doctor actually scolded me two weeks before her diagnosis. I took her to ER
for
> constipation. The x-ray showed constipation and he wanted to know why I didn't
> know when she had had her last bowel movement. She is eight years old she
> doesn't exactly need me holding her hand. I just look back at the whole
> nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
> now!
>
> Marybeth
>
> --- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:
>
> From: stamplifter@... <stamplifter@...>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Wednesday, August 6, 2008, 9:25 PM
>
>
>
>
>
>
> Marybeth,
>
> I think alot of the ER diagnosis depends on what kind of doctor they are, we
> just weren't lucky enough to get an orthopedic oncology doctor. JT ended up
with
> almost a gallon of fluid on his lungs and found out it was Ewings from there.
I
> wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
> heard my story and if it gets someone to a doctor with a CAT scan or MRI
sooner
> than later will help the guilt that I feel about it going on for so long. I
know
> it wasn't my fault but I still find myself saying he might still have his leg
if
> this was caught sooner.
>
> I'm so angry it was mistreated for so long. Where were you diagnosed? We
> actually had it while stationed in Mississippi but weren't diagnosed until we
> moved to Delaware.
>
> Expecting Miracles,
>
> Shauna
>
> ------------ -- Original message ------------ --------- -
> From: marybeth adkins <jazzmbm@yahoo. com>
> >
> > Hi Shauna,
> >
> > I too am interested in the clusters. I can completely associate with you on
> the
> > growing pains. That is all I heard for two years on my daughter. Her pains
> were
> > in her but. I'm telling you, I felt like an idiot for so long taking her in
> with
> > but pain. But we finally hit the er with a more aggressive doctor who did a
> cat
> > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> > football in an 8 year old little girl.
> > Marybeth
> > --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net>
wrote:
> >
> > From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Wednesday, August 6, 2008, 6:06 PM
> >
> >
> >
> >
> >
> >
> > I have been reading all of this and I'd like to add my 2 cents. JT broke his
> leg
> > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
> years
> > we had him in and out of the ER and were told growing pains. He was not an
> > athlete and not really active, being 6'1" he always complained that his legs
> > hurt from the time he was five or six years old. I really think the
> environment
> > has alot to do with him getting it. I was told most Ewings patients find out
> > because of a broken bone. I am very interested in the clusters and more
info.
> >
> > Thanks for sharing,
> >
> > Shauna Mom to JT
> >
> > ------------ -- Original message ------------ --------- -
> > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > Bernie,
> > >
> > > My son was diagnosed during his first semester at Michigan, my daughter
will
> > be
> > > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> > yet,
> > > but plan to look at the links you sent and do a little research myself. I,
> > too,
> > > am quite miffed by the fact that no one ever questioned his medical
history
> to
> > > try and trace back to something, if only for the sake of research. The
other
> > > boys who were diagnosed were athletes as well. I have also questioned the
> > injury
> > > aspect. My son broke his wrist while wrestling in high school, although
his
> > > tumour was on his spine; don't know if theres any correlation.
> > >
> > > Sharon
> > >
> > >
> > > Sharon Kory
> > >
> > > Sharon Kory Interiors Inc
> > > 29000 Inkster Rd. Suite 120
> > > Southfield, MI 48034
> > > phone: 248.357.3600 ext 203
> > > fax: 248.357.3646
> > >
> > > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
> > >
> > > From: bjyoung716 <no_reply@yahoogrou p s.com>
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 9:27 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Sharon & Fawad
> > >
> > > This site had been dormant for a month and all of sudden it's a
> > > whirlwind.
> > >
> > > If you follow the same message I left with Patricia and read the files I
> > > posted, you will get an idea as to how these clusters are studied and
> > > denied through faulty research. I have been working on a list of
> > > exposures which might be factors in Ewing's or any other suspected
> > > cancer excess. I shouldn't have to do this. There are agencies which
> > > ought to be at the task. What we see though is a systematic approach at
> > > denying community cancer clusters.
> > >
> > > I also blog with the National Disease Clusters Alliance. It is a group
> > > of activists, families, victims, doctors, nurses, scientists, and
> > > epidemiologists who have become dissatisfied with the status quo and
> > > feel we ought to be able to find causes for these cancer clusters.
> > > Check out:
> > >
> > > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> > >
> > > If you go to the "search" window and enter keywords "Cape
> > > Cod" or "Ewing's" you will retrieve all the relevant
> > > messages. I'm going to alert them of the activity on this blog.
> > >
> > > What blows my mind is that three and a half years after my daughter's
> > > diagnosis, no one has even asked for her medical history, let alone
> > > investigate lifestyle factors or potential environmental exposures! If
> > > you don't ask the questions, you don't get the answers.
> > >
> > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > sarcoma." You ought to try it. Try it with any sport. My
> > > daughter's sports were volleyball and track, but a football
> > > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > > The conventional wisdom, probably 75years old, is that injuries
> > > don't lead to Ewing's. But I've seen so much bad research
> > > recently, and see so many associations between sports injuries and
> > > Ewing's that I think the source of that doctrine should be flushed
> > > out of the literature and re-examined.
> > >
> > > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > adventure was at Mt. Holly. That was my daughter's name.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > > wrote:
> > > >
> > > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > > least three other boys in our general area diagnosed around the same
> > > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > > the same high school. I have always found this to be quite peculiar, due
> > > to the rarity. The possibility of some environmental factor
> > > contributing to this disease seems to make sense. My son received 10
> > > months of chemo, radiation and surgery in a wonderful hospital in our
> > > area. We are very fortuneate that he is a healthy survivor. He too was
> > > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > > I would be interested in anything that would shed some light on why an
> > > otherwise healthy young man, with no family history of cancer could
> > > contract this horrible disease.
> > > > Best to all of you still struggling and or mourning the loss of a
> > > loved one. Our hearts will always be with you.
> > > >
> > > > Sharon Kory
> > > >
> > > > I am very curious
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Patricia
> > > >
> > > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > > big school (5000 or so) just north of O'hare International Airport.
> > > > That community has perceived an excess of cancer, and I have seen
> > > > contours of incidence that diminish the further you get from the
> > > > airport. To have two cases of such a rare disease so close together
> > > > gets your attention, no matter what the epidemiologists say. Your
> > > > information is interesting.
> > > >
> > > > I belong to several yahoo groups, and all are organized differently.
> > > It
> > > > seems members of this group receive new messages automatically, so you
> > > > don't have to visit the home page (unless you want to download files
> > > or
> > > > search for old messages. If you follow this link:
> > > >
> > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > >
> > > > and click on the word "Files" you can download the files I have
> > > posted.
> > > >
> > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > daughter in January just after her 22 birthday. She battled 3 years,
> > > > and enjoyed much support as she was an active athlete and played on
> > > many
> > > > teams.
> > > >
> > > > If you read my posts, there is an association on Cape Cod between a
> > > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > > there are statistical confounders, and one (on a worldwide basis) is
> > > > contact sports (hockey, football, soccer). I am also suspicious of
> > > > osteochondroma; there seems to be a excess of that disease which
> > > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > > the state health department, a mother with a son who had Ewing's said
> > > > she had another son with osteochondroma!
> > > >
> > > > Most of our professional epidemiologists are inclined to discredit
> > > talk
> > > > of clusters. But this is the 21st century, and with a better educated
> > > > population, the ability to instantaneously communicate with one
> > > another,
> > > > massive information storage and retrieval technology, and the help of
> > > > some friendly epidemiologists, I beleive we may be able to identify
> > > risk
> > > > factors for Ewing's where none now exist.
> > > >
> > > > Do you have any idea if the is a common exposure to some environmental
> > > > factor in your community or school? Even though I live on this side of
> > > > "the pond," I have seen several stories of Ewing's cases in the same
> > > > geographic area you describe. I'd like to know more about your
> > > > concerns. I don't want to bias your thinking before revealing some of
> > > > the confounding factors that have caught my attention.
> > > >
> > > > Hope to we hear more from you.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > <patriciasmith@ ...> wrote:
> > > > >
> > > > > Hi
> > > > >
> > > > > I wonder could you post the information, I live in the republic of
> > > > ireland and we have a population of 3500,000million
> > > > > yet where I live and near by three teenagers at the same time were
> > > > diagnosed with ewings sarcoma.
> > > > > two sat beside one another in the same school.
> > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > > 10
> > > > miles away.
> > > > > I am interested in clusters and I am a member of The bone cancer
> > > > research trust www.bonecancerresea rch.org.uk
> > > > > I got a lot of data from ireland england scotland and wales and we
> > > > seem to have a lot for a small population.
> > > > > there is very little research in this area.
> > > > >
> > > > > regards
> > > > > patricia
> > > > > ireland
> > > > >
> > > > >
> > > > > ----- Original Message -----
> > > > > From: bjyoung716
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > > Scott
> > > > >
> > > > > Thank you for your comments. I have just posted three files on this
> > > > > blog (which I think are visible only to members) which answer most
> > > of
> > > > > the points you raise. They are dated and are best read in
> > > > chronological
> > > > > order; they seem to be listed with most recent on top.
> > > > >
> > > > > I would only add that diagnosis is often delayed, which is of
> > > > particular
> > > > > concern for athletes who are used to playing through pain. Our
> > > medical
> > > > > institutions are world class when it comes to confirming a diagnosis
> > > > and
> > > > > treating the disease. At the local level things are more ordinary.
> > > > >
> > > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > > 67%
> > > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > > Civil Action."
> > > > >
> > > > > I don't know if EMR from our high powered radar station is the
> > > cause,
> > > > > but there are enough reasons to be concerned, and the research
> > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > interested after reading these files, I have a 23 page letter of
> > > > > comments on a recent Environmental Impact Statement I can post.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > > scottbernice@ wrote:
> > > > > >
> > > > > >
> > > > > > Hi Bernie,
> > > > > >
> > > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > > million people) and have been anecdotally surprised at the number of
> > > > > cases just known to me arising in this small country. Turns out the
> > > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > > wondering about "clusters" too. After looking into it all, now I'm
> > > not
> > > > > so sure about the anecdotal math I was doing.
> > > > > >
> > > > > > In your case, Ewing's should appear much more often in the cape
> > > > anyway
> > > > > versus the general poulation. Are you controlling for that? Ewing's
> > > is
> > > > a
> > > > > white person's disease (it shows up 9x more often in white people)
> > > and
> > > > > the cape has 80% fewer "non-whites" then the general population.
> > > > Ewing's
> > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > incidents
> > > > > you count on the cape include the summer/second home population
> > > which
> > > > > may statistically over-index heavily on families with kids versus
> > > the
> > > > > general population? Last, I've read that Ewing's is often discovered
> > > > > "more" in places with access to top teaching hospitals and places
> > > that
> > > > > do great pathology while other locations fail to accurately
> > > > subclassify
> > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > > doctors,
> > > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > > that
> > > > > area more than kids in other places? I don't know. I just think it's
> > > > > hard to control for all of this and accurately assess things.
> > > Ewing's
> > > > is
> > > > > so small and has so many correlations (age, race, diagnostic
> > > variance)
> > > > > that there is huge statistical "standard error" in the data. Given
> > > all
> > > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > > variance from 10 cases when there should have 4. Numbers are just
> > > too
> > > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > > analysis and pathology. I'm not so sure about anything any more!
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > > a
> > > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > > Public
> > > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > > one
> > > > in
> > > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > > pair
> > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > ensemble
> > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > > of
> > > > a
> > > > > particularly high incidence in athletes or athletically active
> > > > > individuals, although I recognize we are becoming a more active
> > > > > society.Anyone have any observations or concerns to offer to this
> > > > > discussion?Bernie
> > > > > >
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> > > > signature database 3329 (20080805) __________
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