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Cape Cod Ewing's Sarcoma Cluster   Message List  
Reply | Forward Message #493 of 519 |
Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster


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



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




Fri Aug 8, 2008 1:51 pm

bjyoung716
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Message #493 of 519 |
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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...
bjyoung716
Offline
Aug 5, 2008
4:39 am

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...
Scott and Bernice Alc...
scottbernice1
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Aug 5, 2008
8:38 am

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...
bjyoung716
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Aug 5, 2008
4:13 pm

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...
patricia smith
milly_cat2001
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Aug 5, 2008
4:51 pm

Hi,     My name is Fawad and I am a Pakistani, I lost my younger brother (Umar) to ewings sarcoma of pelvic bone in Feb 2004. Although we don't have...
Fawad
fawadejaz
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Aug 5, 2008
9:22 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...
bjyoung716
Offline
Aug 5, 2008
11:56 pm

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...
Sharon Kory
sharonlkory
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Aug 6, 2008
12:44 am

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...
bjyoung716
Offline
Aug 6, 2008
1:27 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. ...
Sharon Kory
sharonlkory
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Aug 6, 2008
3:21 pm

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...
marybeth adkins
JAZZMBM
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Aug 6, 2008
10:01 pm

Hi There have been clusters in south of england in a school, as I said it has been something \i have been very interested in, as I said on my own I got from...
patricia smith
milly_cat2001
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Aug 6, 2008
9:12 am

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...
stamplifter@...
stamplifter
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Aug 6, 2008
10:06 pm

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....
marybeth adkins
JAZZMBM
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Aug 7, 2008
12:05 am

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...
stamplifter@...
stamplifter
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Aug 7, 2008
1:25 am

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)...
bjyoung716
Offline
Aug 7, 2008
3:28 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...
marybeth adkins
JAZZMBM
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Aug 7, 2008
12:34 pm

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...
teresa alvarez
alvteresa
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Aug 7, 2008
2:21 pm

Hi my daughter Krystle in the February 2001 was playing rackettball in the local leisure centre she was a tall young girl of 17 years old she tripped and fell...
patricia smith
milly_cat2001
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Aug 7, 2008
9:41 am

... From: marybeth adkins To: ewingssarcoma@yahoogroups.com Sent: Thursday, August 07, 2008 5:34 AM Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma...
patricia smith
milly_cat2001
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Aug 7, 2008
2:18 pm

Hi I was just thinking about something Krystle was left handed and I go to a meeting of Bone Cancer research trust in the Uk every 10 weeks and I was asking...
patricia smith
milly_cat2001
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Aug 7, 2008
2:22 pm

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...
stamplifter@...
stamplifter
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Aug 7, 2008
8:17 pm

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...
stamplifter@...
stamplifter
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Aug 7, 2008
8:32 pm

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...
bjyoung716
Offline
Aug 8, 2008
1:51 pm

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...
stamplifter@...
stamplifter
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Aug 7, 2008
8:45 pm
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