My daughter was diagnosed in 2002 at age eight, she was involved in some sports,
but not much at that age. However, another child at the same school was
diagnosed with Ewings also a year later. Our population is 3800 in our town.
Interesting also that six months prior to my daughter's diagnosis, a one year
old child was diagnosed with Neuroblastoma, and apparantly there is some
relation and similarities between Ewings and Neuroblastoma.
I live in Virginia.
 
Marybeth

--- On Wed, 8/6/08, Sharon Kory <sharonlkory@...> wrote:

From: Sharon Kory <sharonlkory@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, August 6, 2008, 11:21 AM






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]
> >
>
> [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]

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


















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