Tom, you will be in my thoughts and prayers on Friday!!

--- In Epithelioid_Sarcoma@yahoogroups.com, "Tom Lamb" <lambli@...>
wrote:
>
>  It is good to hear that you are doing well. I was diagnosed in
> September of 2006 with E.S.. Mine was in my groin area. I went
through
> 4 surgeries, 28 days of radiation, and 6 rounds of chemo. I was all
> done with everything June of 2007. All my CAT scans have been
negative
> so far. I go Friday February,8 for another scan. I have had great
> doctors at the Hillman Cancer Center in Pittsburgh. I used the
> Corporate Angels Network to go to Dana-Farber in Boston for my
chemo
> cocktail. I live in Youngstown, Ohio and got my chemo at the Blood
and
> Cancer center. I thank all that supported me, especially my wife
Lori.
> It is a team effort. Contact me if you have questions. God bless.
>

ANDREW, THAT IS WONDERFUL!!!  I'm soooooo happy for you.  I just
can't tell you how wonderful this is!  Wouldn't it be great if this
treatment is the key!?!?!?!?!?  Please keep us updated and my prayers
are with you always!!!--- In
Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@...> wrote:
>
> Hi there peoples,
>
> I have just returned from Melbourne where I had PET and MRI scans
> yesterday to see whats happening with my tumor.  My hope was that
it
> hadn't spread and that hopefully the tumor was smaller than the
last
> scan done in Nov 07.  The news was better than I hoped for - no
> spread of the tumor and better still no mitoic activity in the
tumor
> bed.  Both the MRI and PET scan conclusions were that the tumor
> appears to be dead and all that remains is scar tissue.  My
> Australian oncologist is very impressed because when he first took
my
> case he didnt believe the treatment I recieved in China would
> significantly alter my tumor.
>
> They also re-did the path work on my biopsy slides and have
> reclassified my ES from proximal type to dorsal proximal mix which
> they explained is slightly better than straight proximal.  So all
in
> all a good day - this is only the 3rd time I've had to have scans
to
> check tumor progress and it sucks big time - that time between
having
> the scans and getting the results back.  Fortunately at least this
> time I had the scans Tues afternoon and got them at 9am Wed
morning -
> the previous 2 occasions I've had to wait 2 or 3 days for the
results.
>
> Anyways just thought I would update on my progress
> Cheers
>

Becky, it's good to hear from you again.  I do want to add that they
are beginning to see that amputation is not always a guarantee.

--- In Epithelioid_Sarcoma@yahoogroups.com, "Becky" <mauibecka@...>
wrote:
>
> I don't really have advice to give, but wanted to let you know that
> you will always find support here.
>
> when my mom first had her tumor in her leg, we were really happy
> that they didn't have to amputate. But she just told me last week
> that at the time she had been mentally preparing herself for it and
> that sometimes now (after 3 more occurences) she wishes they HAD
> done an amputation.  But they made the best call they could at the
> time (1997).  It sounds like you have as good a shot as you can at
> stopping it right there at the thumb.  Keep vigilant in your follow
> up care/scans.
>
> My advice is similar to what kathy said - turn to the sarcoma
> alliance site for more support and make sure you have a sarcoma
> specialist.
>
> You have my prayers and best wishes!
>
> Becky
>
> --- In Epithelioid_Sarcoma@yahoogroups.com, "chiogeek"
> <chiogeek@> wrote:
> >
> > Hi everyone! I thought since everyone was sharing thier
> experiences
> > with ES, i might was well introduce myself. My name is Christine
> and
> > I'm a 21 year old college student. In Aug 2007 i was diagnosed
> with ES
> > in my left thumb. There was a bump that had been there for about
a
> year
> > when I finally got it removed. A few days after my first surgery,
> I
> > recieved a call from the doctor, and he sent me to an oncologist
> who
> > diaognosed me. I had a full MRI of my arm, a full body bone scan
> and a
> > scan of my lungs. They were all clear, but  the doc had to
> amputate my
> > left thumb so it wouldn't spread. I ended up with a 1 cm clear
> margin,
> > and I couldn't be happier! I'm now going through MRIs every 3
> months,
> > and even though I had that clear margin, I'm still terrified of
> the
> > results. I made the mistake of serching on the Internet for ES,
> and i
> > scared myself to death looking at all of the research. I know
this
> > sarcoma can't "jump" over normal tissue, and I also know that if
> it
> > spread somewhere in my body from my thumb, I wouldn't have a
clear
> > margin. Is there anyone who can give words of encouragement?
> Thanks,
> > Christine
> >
>

Great news - I am very happy for you and wish you continued health!

--- In Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@...>
wrote:
>
> Hi there peoples,
>
> I have just returned from Melbourne where I had PET and MRI scans
> yesterday to see whats happening with my tumor.  My hope was that
it
> hadn't spread and that hopefully the tumor was smaller than the
last
> scan done in Nov 07.  The news was better than I hoped for - no
> spread of the tumor and better still no mitoic activity in the
tumor
> bed.  Both the MRI and PET scan conclusions were that the tumor
> appears to be dead and all that remains is scar tissue.  My
> Australian oncologist is very impressed because when he first took
my
> case he didnt believe the treatment I recieved in China would
> significantly alter my tumor.
>
> They also re-did the path work on my biopsy slides and have
> reclassified my ES from proximal type to dorsal proximal mix which
> they explained is slightly better than straight proximal.  So all
in
> all a good day - this is only the 3rd time I've had to have scans
to
> check tumor progress and it sucks big time - that time between
having
> the scans and getting the results back.  Fortunately at least this
> time I had the scans Tues afternoon and got them at 9am Wed
morning -
> the previous 2 occasions I've had to wait 2 or 3 days for the
results.
>
> Anyways just thought I would update on my progress
> Cheers
>

Hi there peoples,

I have just returned from Melbourne where I had PET and MRI scans
yesterday to see whats happening with my tumor.  My hope was that it
hadn't spread and that hopefully the tumor was smaller than the last
scan done in Nov 07.  The news was better than I hoped for - no
spread of the tumor and better still no mitoic activity in the tumor
bed.  Both the MRI and PET scan conclusions were that the tumor
appears to be dead and all that remains is scar tissue.  My
Australian oncologist is very impressed because when he first took my
case he didnt believe the treatment I recieved in China would
significantly alter my tumor.

They also re-did the path work on my biopsy slides and have
reclassified my ES from proximal type to dorsal proximal mix which
they explained is slightly better than straight proximal.  So all in
all a good day - this is only the 3rd time I've had to have scans to
check tumor progress and it sucks big time - that time between having
the scans and getting the results back.  Fortunately at least this
time I had the scans Tues afternoon and got them at 9am Wed morning -
the previous 2 occasions I've had to wait 2 or 3 days for the results.

Anyways just thought I would update on my progress
Cheers

It is good to hear that you are doing well. I was diagnosed in
September of 2006 with E.S.. Mine was in my groin area. I went through
4 surgeries, 28 days of radiation, and 6 rounds of chemo. I was all
done with everything June of 2007. All my CAT scans have been negative
so far. I go Friday February,8 for another scan. I have had great
doctors at the Hillman Cancer Center in Pittsburgh. I used the
Corporate Angels Network to go to Dana-Farber in Boston for my chemo
cocktail. I live in Youngstown, Ohio and got my chemo at the Blood and
Cancer center. I thank all that supported me, especially my wife Lori.
It is a team effort. Contact me if you have questions. God bless.

I don't really have advice to give, but wanted to let you know that
you will always find support here.

when my mom first had her tumor in her leg, we were really happy
that they didn't have to amputate. But she just told me last week
that at the time she had been mentally preparing herself for it and
that sometimes now (after 3 more occurences) she wishes they HAD
done an amputation.  But they made the best call they could at the
time (1997).  It sounds like you have as good a shot as you can at
stopping it right there at the thumb.  Keep vigilant in your follow
up care/scans.

My advice is similar to what kathy said - turn to the sarcoma
alliance site for more support and make sure you have a sarcoma
specialist.

You have my prayers and best wishes!

Becky

--- In Epithelioid_Sarcoma@yahoogroups.com, "chiogeek"
<chiogeek@...> wrote:
>
> Hi everyone! I thought since everyone was sharing thier
experiences
> with ES, i might was well introduce myself. My name is Christine
and
> I'm a 21 year old college student. In Aug 2007 i was diagnosed
with ES
> in my left thumb. There was a bump that had been there for about a
year
> when I finally got it removed. A few days after my first surgery,
I
> recieved a call from the doctor, and he sent me to an oncologist
who
> diaognosed me. I had a full MRI of my arm, a full body bone scan
and a
> scan of my lungs. They were all clear, but  the doc had to
amputate my
> left thumb so it wouldn't spread. I ended up with a 1 cm clear
margin,
> and I couldn't be happier! I'm now going through MRIs every 3
months,
> and even though I had that clear margin, I'm still terrified of
the
> results. I made the mistake of serching on the Internet for ES,
and i
> scared myself to death looking at all of the research. I know this
> sarcoma can't "jump" over normal tissue, and I also know that if
it
> spread somewhere in my body from my thumb, I wouldn't have a clear
> margin. Is there anyone who can give words of encouragement?
Thanks,
> Christine
>

Christine dear, I'm so sorry that you have to go thru this crap.
Your life is just beginning.

I completely understand your worry when you read about ES on the
net.  It was back in 2000 when I first heard the words and there was
a lot less info then - I think I only found 2 sites and they were
both quite outdated!

But, on a positive side, I had heard the word Sarcoma when I was in
High School - back in the day!!  1969, to be exact!!  Our class was
learning about different cancers, and our teacher, a Registered
Nurse, told us if a patient is diagnosed with Sarcoma "they will
die."  So imagine my fears with I heard it again in 2000 - and it was
associated with my daughter!!!!!!!

I never told her that story.  I never told anyone until after she
died.

The good thing is that, in 30 years time, Sarcomas went from being a
death sentence to a 20% survival rate - I believe that's what ES is
considered.

I remember Stephanie's doctor telling us that ES can 'sheet' along
muscles, making it hard to pick up on a scan.

I do hope you have consulted with a Sarcoma Specialist!!  This is THE
most important thing you can do for yourself!!!

Most Oncologists will never even see a Sarcoma during their years of
practice.  You want someone who knows as much as possible about the
different kinds, different treatments, what works and what doesn't,
and clinical trials available.  Sarcoma Specialists will be at one of
the few Sarcoma Clinics around the US, and world.

I know that Sarcoma Alliance has a good list of specialists and they
will even help financially if you want to get a second opinion.

--- In Epithelioid_Sarcoma@yahoogroups.com, "chiogeek" <chiogeek@...>
wrote:
>
> Hi everyone! I thought since everyone was sharing thier experiences
> with ES, i might was well introduce myself. My name is Christine
and
> I'm a 21 year old college student. In Aug 2007 i was diagnosed with
ES
> in my left thumb. There was a bump that had been there for about a
year
> when I finally got it removed. A few days after my first surgery, I
> recieved a call from the doctor, and he sent me to an oncologist
who
> diaognosed me. I had a full MRI of my arm, a full body bone scan
and a
> scan of my lungs. They were all clear, but  the doc had to amputate
my
> left thumb so it wouldn't spread. I ended up with a 1 cm clear
margin,
> and I couldn't be happier! I'm now going through MRIs every 3
months,
> and even though I had that clear margin, I'm still terrified of the
> results. I made the mistake of serching on the Internet for ES, and
i
> scared myself to death looking at all of the research. I know this
> sarcoma can't "jump" over normal tissue, and I also know that if it
> spread somewhere in my body from my thumb, I wouldn't have a clear
> margin. Is there anyone who can give words of encouragement?
Thanks,
> Christine
>

Hi everyone! I thought since everyone was sharing thier experiences
with ES, i might was well introduce myself. My name is Christine and
I'm a 21 year old college student. In Aug 2007 i was diagnosed with ES
in my left thumb. There was a bump that had been there for about a year
when I finally got it removed. A few days after my first surgery, I
recieved a call from the doctor, and he sent me to an oncologist who
diaognosed me. I had a full MRI of my arm, a full body bone scan and a
scan of my lungs. They were all clear, but  the doc had to amputate my
left thumb so it wouldn't spread. I ended up with a 1 cm clear margin,
and I couldn't be happier! I'm now going through MRIs every 3 months,
and even though I had that clear margin, I'm still terrified of the
results. I made the mistake of serching on the Internet for ES, and i
scared myself to death looking at all of the research. I know this
sarcoma can't "jump" over normal tissue, and I also know that if it
spread somewhere in my body from my thumb, I wouldn't have a clear
margin. Is there anyone who can give words of encouragement? Thanks,
Christine

Thanks, Kathy!  We are glad they are going to try this first rather
than traditional surgery.  If it doesn't get rid of it, she can still
try surgery but hopefully she won't need it!  And she is hoping that
this will provide more options and information/data for others out
there.  I'll post when we know more!

--- In Epithelioid_Sarcoma@yahoogroups.com, "Kathy Zuber"
<PostalAnnex6114@...> wrote:
>
> Good luck to your mom with this treatment!!  I'll say prayers for
> her!!
>
>

Good luck to your mom with this treatment!!  I'll say prayers for
her!!

--- In Epithelioid_Sarcoma@yahoogroups.com, "Becky" <mauibecka@...>
wrote:
>
> My mom has ES.  Originally in her leg 10 yrs ago, one recurrence at
5
> years, several lung mets in her right lung last year and now a met
in
> a lymph node in her abdomen, just below her diaphragm.  I don't
know
> that there will be info of benefit to your paper, but as a
radiology
> student, I thought you might be interested to know that she will be
> trying the cyberknife radiation procedure.  I think she will begin
the
> treatments next week.  The radiation oncologist did tell us that he
> feels ES is resistant to radiation, but of course, this is not
typical
> radiation.  So we are hopeful.  I will post any and all info on her
> result/experience here.  Keep up the good work - everything that
you
> learn and share has the potential to help another person fighting
this
> disease!
>
> --- In Epithelioid_Sarcoma@yahoogroups.com, "ashleyjrm"
> <ashleyjrm@> wrote:
> >
> > Hello Everyone,
> >
> >      I am writing because a loved one in my family has had
> epithelioid
> > sarcoma.  I am currently at school as a radiologic technologist
> > major.  I am doing a detailed report on Epithelioid Sarcoma for
my
> > senior project to raise awareness about this rare sarcoma. I have
> been
> > searching and searching for information and cant find any
dependable
> > resources.  Could anyone give me any helpful information or tell
me
> > where I could find some information?
> >
>

My mom has ES.  Originally in her leg 10 yrs ago, one recurrence at 5
years, several lung mets in her right lung last year and now a met in
a lymph node in her abdomen, just below her diaphragm.  I don't know
that there will be info of benefit to your paper, but as a radiology
student, I thought you might be interested to know that she will be
trying the cyberknife radiation procedure.  I think she will begin the
treatments next week.  The radiation oncologist did tell us that he
feels ES is resistant to radiation, but of course, this is not typical
radiation.  So we are hopeful.  I will post any and all info on her
result/experience here.  Keep up the good work - everything that you
learn and share has the potential to help another person fighting this
disease!

--- In Epithelioid_Sarcoma@yahoogroups.com, "ashleyjrm"
<ashleyjrm@...> wrote:
>
> Hello Everyone,
>
>      I am writing because a loved one in my family has had
epithelioid
> sarcoma.  I am currently at school as a radiologic technologist
> major.  I am doing a detailed report on Epithelioid Sarcoma for my
> senior project to raise awareness about this rare sarcoma. I have
been
> searching and searching for information and cant find any dependable
> resources.  Could anyone give me any helpful information or tell me
> where I could find some information?
>

You're welcome to use the information Stephanie and I have written
about my daughter, Stephanie, if you want a personal perspective.  I
think there is a link to my Yahoo 360 blog.

I also have several good links here.  I got a lot out of the Moss
Report.

There really isn't much about this particular Sarcoma.  Lots more
than there was 7 year ago!!

If there's anything else I can do to help - just ask.


--- In Epithelioid_Sarcoma@yahoogroups.com, "ashleyjrm"
<ashleyjrm@...> wrote:
>
> Hello Everyone,
>
>      I am writing because a loved one in my family has had
epithelioid
> sarcoma.  I am currently at school as a radiologic technologist
> major.  I am doing a detailed report on Epithelioid Sarcoma for my
> senior project to raise awareness about this rare sarcoma. I have
been
> searching and searching for information and cant find any
dependable
> resources.  Could anyone give me any helpful information or tell me
> where I could find some information?
>

Hello Everyone,

      I am writing because a loved one in my family has had epithelioid
sarcoma.  I am currently at school as a radiologic technologist
major.  I am doing a detailed report on Epithelioid Sarcoma for my
senior project to raise awareness about this rare sarcoma. I have been
searching and searching for information and cant find any dependable
resources.  Could anyone give me any helpful information or tell me
where I could find some information?

I am on the Sarcoma Alliance board. I am also a advocate. I will let
you all know how my scan goes. Keep the Faith!

That sounds great!!  I'm so glad for you!!  PLEASE keep us updated
with your progress.

Have you ever shared this information on the Sarcoma Alliance
Website?  It might help others there also.

--- In Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@...>
wrote:
>
> Hi Kathy,
>
> Dr Wang published a study just recently on the beneficial effects
of
> SPDT used in conjunction with radio seed implants and localised
> chemo.  I will be talking to him in the next few days so will ask
him
> which journal it was published in and if he can send me a copy of
his
> study.  The study revolved more around treatments of various
> carcinoma - particularily metastatic lung, liver and breast cancers
> rather than sarcoma but I wanted to post my experience using this
> treatment protocol.  There was another woman in the same hospital
as
> me with a 14cm sarcoma in her right thigh.  She had exhausted all
> other treatment options and was told amputation was her only chance
> now.  She is also being treated by Dr Wang and after 3 treatments
her
> tumor has reduced by almost 70%. In her case there was metastatic
> spread to her thyroid but her last PET scan in Nov showed no sign
of
> tumor activity in the thyroid.
>
> The Dr's here in Australia were very sceptical at first but have
> conceded now that something positive has happened with my ES and it
> MAY have something to do with my treatment under Dr Wang.  None of
> them realised that they were using plant rather than animal based
> sensitisers with SPDT and infra red light and HIFU to activate them
> and for deeper penetration.  PDT is used quite widely in Australia
> for the treatment of superficial skin cancer, shallow melanoma and
> non-small cell lung cancer where UV light can be shone directly on
> the tumor.  I have found it frustrating that even though the
Chinese
> have possibly developed a non-intrusive way to treat deeper tumors
> the "western" mentality amongst Dr's is to scoff and show no real
> interest in the treatment.
>
> The best thing I ever did was to take charge of my own treatment -
be
> guided by the experts but do my own research and make my own
> decisions and to constantly question my Dr's about what they are
> doing and what they hope to achieve.  At this point in time Dr Wang
> is my treating oncologist and I am using the oncologists at Peter
Mac
> for monitoring only.  I make sure that every scan I have is sent
back
> to Dr Wang.  Luckily for me, my treating oncologist at Peter Mac
> doesnt have a problem with this and is happy to copy Dr Wang on
> everything.
>
> On a slightly more humorous note - the Brachytherapist I saw on my
> last trip to Melbourne came bounding up to me at the hospital and
> said how excited she was to meet me.  When I asked her why I was so
> exciting she said that she only ever gets to film prostates (radio
> seed implants are only used in Australia for Prostate Cancer) so it
> was a real novelty to film the top rather than the bottom of the
> torso.  She gave me some really useful information on
brachyotherapy
> and was really impressed with what the Chinese had done with
regards
> to seed placement and coverage within the tumor.
>
> One final note, I have to say that the staff at Peter McCallum are
> fantastic after my initial experiences in Brisbane.  Most
> importantly, my oncologist is always available and the 2
appointments
> I have had with him so far have been about 2hours each time.  In
> Brisbane the experience was having to wait 2 hours and then maybe
> having the attention of the oncologist for 20min if I was lucky.
It
> is worth the 2 1/2 hour flight for each appointment.
> :)
> Andy
>
> --- In Epithelioid_Sarcoma@yahoogroups.com, "Kathy Zuber"
> <PostalAnnex6114@> wrote:
> >
> > It's great to hear such a positive outlook.  I hope this
treatment
> > continues to be very successful!!!  Have they done any clinical
> trial
> > on this form of treatment?  Have you seen any of that data?  That
> > would be a great report to share!!
> >
> > Good luck and please keep up up-to-date!!
> >
> >
> > --- In Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@>
> > wrote:
> > >
> > > Hi there guys,
> > >
> > > I was doing a search on the web and came across your group.  My
> > name
> > > is Andrew and I was diagnosed with Proximal type Epithelioid
> > Sarcoma
> > > in June 2007.  My tumor is located in the left brachial plexus
> and
> > > extends along the vertebrae from C2 through to T2.  The sarcoma
> is
> > > also in the C3 and C4 vertebrae.
> > >
> > > I live in sunny Queensland in Australia and was originally
> referred
> > > to an Orthopedic Oncologist in Brisbane who specialises in the
> > > treatment of STS.  Basically I was told that the only treatment
> for
> > > my condition was surgical removal of the tumor with clear
> margin.
> > To
> > > achieve this, my spine was to be replaced from C2 through to
> T3,and
> > > total removal of the left para-spinal muscles.  The downside of
> > this
> > > was paraylis of my left arm (rather daunting as I am left
> handed),
> > > fusion of my neck and probable paralysis of my left hand chest
> > making
> > > it more than likely that I would eventually require assisted
> > > breathing.  I saw 2 spinal surgeons who both felt that there
was
> > > approx 20-25% chance of spinal cord damage during the surgery
> > > resulting in anything from a funny gait when walking through to
> > > quadraplegia.  After the surgery the recommendation was 6 weeks
> of
> > > radiation therapy.  I was also advised that even after the
> surgery
> > > (with clear margin) and post-op radiation therapy there was a
> > greater
> > > than 60% chance that there would be a recurrence within 5yrs -
> most
> > > likely in the same general area but with a greater chance of
> > > metastatic disease.
> > >
> > > To be honest I weighed up the whole thing and decided against
the
> > > surgery - valuing quality of life over quantity.  Not one to
sit
> > > around and resign myself to dying young, (I am 39) I decided to
> do
> > my
> > > own research into ES and the various treatments available.  I
> > > discovered three things very quickly; 1. there is very little
> > quality
> > > literature available on ES - even in the medical and oncology
> > > journals I now subscribe to 2. very few sarcoma oncologists
have
> > ever
> > > treated ES. 3. the prognosis for ES in general and proximal ES
in
> > > particular is quite depressing.
> > >
> > > I took the advice of my family Dr and decided to not get hung
up
> on
> > > the prognosis and move forward.  I was not comfortable with the
> > > original STS oncologist I was referred to in Brisbane for a
> number
> > of
> > > reasons - foremost being that he was almost impossible to get
> hold
> > of
> > > to ask questions, when I did manage to ask questions I was made
> to
> > > feel like I didn't need to know that information and I found
him
> to
> > > be rude and arrogant.  My first disagreement with him was when
he
> > > gave me the results of the biopsy.  I asked for a PET scan to
> check
> > > for metastatic disease and he told me point blank that he
> wouldn't
> > > order one until after the surgery as any secondaries would not
be
> > > treated until the primary was dealt with.  Needless to say I
did
> > get
> > > some pleasure in calling him after I decided not to go ahead
with
> > the
> > > surgery and informing him that I had no confidence in him and
> would
> > > be looking at other treatment options with other Dr's.
> > >
> > > I was reading an article in one of the oncology journals I
> decided
> > to
> > > subscribe to and came across an article by a Chinese Oncologist
> > based
> > > in Guangzhao PRC, about the use of Sonic and Photodynamic
Therapy
> > > (SPDT) in the treatment of various types of tumors.  As I had
> > nothing
> > > to loose, I managed to contact him and described my condition
to
> > > him.  In the end I decided to go to China for treatment.  He
> > arranged
> > > for me to have ultra sounds, CT's and PET scans when I got
there
> > and
> > > thankfully my ES is localised at this point in time.  You guys
> > would
> > > understand what a relief it is to be told that the tumor is
> > > localised.  I have had 2 cycles of treatment in China so far
> > > (September 07 & November 07) and go back for one final round
> > > (hopefully) in Feb 08.  My first round of treatment consisted
of
> > > implantation of 50 radio seeds into the tumor area (approx
> 8000cGy)
> > > under CT guidance followed by chemotherapy injected directly
into
> > the
> > > tumor.  Side effects were minimal (localised pain in the tumor
> site
> > > and 1 day of feeling run-down and nauseous - the result of the
> > > chemo).  I then had 2 weeks of SPDT which involved taking a
> > > sensitiser for 2 days, then 1hour of whole body ultrasound
> > treatment
> > > followed by 25min of HIFU directly to the tumor area.  1 hour
> > laying
> > > under an infra-red lamp shining directly on the tumor site.
> > >
> > > The results in my case have been outstanding to date.  When I
> left
> > to
> > > go to China, I had no feeling in my left arm (I could use it
but
> i
> > > was numb from the shoulder right down to the fingertips), I had
> > pain
> > > under my left arm and across the left side of my chest, pain up
> the
> > > back of my head to behind my left ear and considerable pain
along
> > the
> > > upper part of my spine and neck.  I was taking approximately 12-
> 14
> > > painkillers/day to cope with the pain and to allow me a few
hours
> > > sleep each night.  By the time I returned to China in November
> for
> > > the 2nd round of treatment I had regained full feeling in my
left
> > > arm, no underarm and chest pain any longer, no pain up the back
> of
> > my
> > > head and no spinal pain.  The only pain remaining was in my
neck
> > and
> > > that feels more like a pulled muscle than anything else.
> > >
> > > In November 07 I returned for my second round of treatment.  I
> had
> > > another PET scan done that showed that almost 90% of the tumor
is
> > > dead (described on the report as tumor necrosis).  The original
> > tumor
> > > size was 5cm x 7cm x 3.5cm.  After the first round of treatment
> the
> > > PET scan showed only a small piece of tumor between C7 & T1
(2cm
> x
> > > 1.7cm)as still being active.  Furthermore, the vertebral bones
> that
> > > were infected now show no sign of disease.
> > >
> > > My second round of treatment in November consisted of
> implantation
> > of
> > > a further 20 seeds plus chemo injected directly into the tumor
> bed.
> > > Once again the chemo caused some nausea and tiredness for about
a
> > day
> > > and then I was fine.  I then had a 2nd round of SPDT as
described
> > > above.
> > >
> > > When I came back to Australia in December I was referred to
Peter
> > > McCallum Cancer Institute in Melbourne and am having my follow-
up
> > > done here.  Fortunately I have a great oncologist now that has
> > > actually treated ES before.  I had a PET scan last week (Jan
8th)
> > and
> > > at this point in time there is no tumor activity at all.  My
> > > oncologist is quietly confident that at the very least, the
> disease
> > > is now in remission as the orginal tumor bed is showing no
> activity
> > > whatsoever.  I return to Melbourne in Feb for another PET and
MRI
> > > scan and am following that up in late Feb with another trip to
> > China
> > > for another round of SPDT.
> > >
> > > I apologise for writing so much, but I wanted to share my story
> to
> > > give other ES sufferers some hope that its definately not the
> death
> > > sentence most of the ES prognosis I have read in journals say
it
> is
> > > and that at the very least, with expert treatment and regular
> > > followup it can be controlled.
> > >
> >
>

My daughter's was in her groin also, back in 2000.  She had 4 rounds of
Chemo 24/7 for 5 days, a second surgery, and then 49 radiation
treatments.

--- In Epithelioid_Sarcoma@yahoogroups.com, "lambli47" <lambli@...>
wrote:
>
> I was diagnosed in August of 2006. Mine was located in my groin. I
went
> to the Hillman Cancer Institute in Pittsburgh. I had 3 surgeries
after
> my initial one in Youngstown. I went to Dana-Farber in Boston where
> they came up with a chemo-radiation mix. 28 days of radiation and 6
> rounds of chemo later I am doing well with no mets. I am going soon
for
> another C.A.T. scan in Pittsburgh. I have lymphodemia as the result
of
> having 17 lymphnodes removed from my left leg. Small price to pay to
> see my wife and kids. Wish all of you the best of luck and I am here
to
> help anyone that has questions. We must have faith!
>

I was diagnosed in August of 2006. Mine was located in my groin. I went
to the Hillman Cancer Institute in Pittsburgh. I had 3 surgeries after
my initial one in Youngstown. I went to Dana-Farber in Boston where
they came up with a chemo-radiation mix. 28 days of radiation and 6
rounds of chemo later I am doing well with no mets. I am going soon for
another C.A.T. scan in Pittsburgh. I have lymphodemia as the result of
having 17 lymphnodes removed from my left leg. Small price to pay to
see my wife and kids. Wish all of you the best of luck and I am here to
help anyone that has questions. We must have faith!

Hi Kathy,

Dr Wang published a study just recently on the beneficial effects of
SPDT used in conjunction with radio seed implants and localised
chemo.  I will be talking to him in the next few days so will ask him
which journal it was published in and if he can send me a copy of his
study.  The study revolved more around treatments of various
carcinoma - particularily metastatic lung, liver and breast cancers
rather than sarcoma but I wanted to post my experience using this
treatment protocol.  There was another woman in the same hospital as
me with a 14cm sarcoma in her right thigh.  She had exhausted all
other treatment options and was told amputation was her only chance
now.  She is also being treated by Dr Wang and after 3 treatments her
tumor has reduced by almost 70%. In her case there was metastatic
spread to her thyroid but her last PET scan in Nov showed no sign of
tumor activity in the thyroid.

The Dr's here in Australia were very sceptical at first but have
conceded now that something positive has happened with my ES and it
MAY have something to do with my treatment under Dr Wang.  None of
them realised that they were using plant rather than animal based
sensitisers with SPDT and infra red light and HIFU to activate them
and for deeper penetration.  PDT is used quite widely in Australia
for the treatment of superficial skin cancer, shallow melanoma and
non-small cell lung cancer where UV light can be shone directly on
the tumor.  I have found it frustrating that even though the Chinese
have possibly developed a non-intrusive way to treat deeper tumors
the "western" mentality amongst Dr's is to scoff and show no real
interest in the treatment.

The best thing I ever did was to take charge of my own treatment - be
guided by the experts but do my own research and make my own
decisions and to constantly question my Dr's about what they are
doing and what they hope to achieve.  At this point in time Dr Wang
is my treating oncologist and I am using the oncologists at Peter Mac
for monitoring only.  I make sure that every scan I have is sent back
to Dr Wang.  Luckily for me, my treating oncologist at Peter Mac
doesnt have a problem with this and is happy to copy Dr Wang on
everything.

On a slightly more humorous note - the Brachytherapist I saw on my
last trip to Melbourne came bounding up to me at the hospital and
said how excited she was to meet me.  When I asked her why I was so
exciting she said that she only ever gets to film prostates (radio
seed implants are only used in Australia for Prostate Cancer) so it
was a real novelty to film the top rather than the bottom of the
torso.  She gave me some really useful information on brachyotherapy
and was really impressed with what the Chinese had done with regards
to seed placement and coverage within the tumor.

One final note, I have to say that the staff at Peter McCallum are
fantastic after my initial experiences in Brisbane.  Most
importantly, my oncologist is always available and the 2 appointments
I have had with him so far have been about 2hours each time.  In
Brisbane the experience was having to wait 2 hours and then maybe
having the attention of the oncologist for 20min if I was lucky.  It
is worth the 2 1/2 hour flight for each appointment.
:)
Andy

--- In Epithelioid_Sarcoma@yahoogroups.com, "Kathy Zuber"
<PostalAnnex6114@...> wrote:
>
> It's great to hear such a positive outlook.  I hope this treatment
> continues to be very successful!!!  Have they done any clinical
trial
> on this form of treatment?  Have you seen any of that data?  That
> would be a great report to share!!
>
> Good luck and please keep up up-to-date!!
>
>
> --- In Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@>
> wrote:
> >
> > Hi there guys,
> >
> > I was doing a search on the web and came across your group.  My
> name
> > is Andrew and I was diagnosed with Proximal type Epithelioid
> Sarcoma
> > in June 2007.  My tumor is located in the left brachial plexus
and
> > extends along the vertebrae from C2 through to T2.  The sarcoma
is
> > also in the C3 and C4 vertebrae.
> >
> > I live in sunny Queensland in Australia and was originally
referred
> > to an Orthopedic Oncologist in Brisbane who specialises in the
> > treatment of STS.  Basically I was told that the only treatment
for
> > my condition was surgical removal of the tumor with clear
margin.
> To
> > achieve this, my spine was to be replaced from C2 through to
T3,and
> > total removal of the left para-spinal muscles.  The downside of
> this
> > was paraylis of my left arm (rather daunting as I am left
handed),
> > fusion of my neck and probable paralysis of my left hand chest
> making
> > it more than likely that I would eventually require assisted
> > breathing.  I saw 2 spinal surgeons who both felt that there was
> > approx 20-25% chance of spinal cord damage during the surgery
> > resulting in anything from a funny gait when walking through to
> > quadraplegia.  After the surgery the recommendation was 6 weeks
of
> > radiation therapy.  I was also advised that even after the
surgery
> > (with clear margin) and post-op radiation therapy there was a
> greater
> > than 60% chance that there would be a recurrence within 5yrs -
most
> > likely in the same general area but with a greater chance of
> > metastatic disease.
> >
> > To be honest I weighed up the whole thing and decided against the
> > surgery - valuing quality of life over quantity.  Not one to sit
> > around and resign myself to dying young, (I am 39) I decided to
do
> my
> > own research into ES and the various treatments available.  I
> > discovered three things very quickly; 1. there is very little
> quality
> > literature available on ES - even in the medical and oncology
> > journals I now subscribe to 2. very few sarcoma oncologists have
> ever
> > treated ES. 3. the prognosis for ES in general and proximal ES in
> > particular is quite depressing.
> >
> > I took the advice of my family Dr and decided to not get hung up
on
> > the prognosis and move forward.  I was not comfortable with the
> > original STS oncologist I was referred to in Brisbane for a
number
> of
> > reasons - foremost being that he was almost impossible to get
hold
> of
> > to ask questions, when I did manage to ask questions I was made
to
> > feel like I didn't need to know that information and I found him
to
> > be rude and arrogant.  My first disagreement with him was when he
> > gave me the results of the biopsy.  I asked for a PET scan to
check
> > for metastatic disease and he told me point blank that he
wouldn't
> > order one until after the surgery as any secondaries would not be
> > treated until the primary was dealt with.  Needless to say I did
> get
> > some pleasure in calling him after I decided not to go ahead with
> the
> > surgery and informing him that I had no confidence in him and
would
> > be looking at other treatment options with other Dr's.
> >
> > I was reading an article in one of the oncology journals I
decided
> to
> > subscribe to and came across an article by a Chinese Oncologist
> based
> > in Guangzhao PRC, about the use of Sonic and Photodynamic Therapy
> > (SPDT) in the treatment of various types of tumors.  As I had
> nothing
> > to loose, I managed to contact him and described my condition to
> > him.  In the end I decided to go to China for treatment.  He
> arranged
> > for me to have ultra sounds, CT's and PET scans when I got there
> and
> > thankfully my ES is localised at this point in time.  You guys
> would
> > understand what a relief it is to be told that the tumor is
> > localised.  I have had 2 cycles of treatment in China so far
> > (September 07 & November 07) and go back for one final round
> > (hopefully) in Feb 08.  My first round of treatment consisted of
> > implantation of 50 radio seeds into the tumor area (approx
8000cGy)
> > under CT guidance followed by chemotherapy injected directly into
> the
> > tumor.  Side effects were minimal (localised pain in the tumor
site
> > and 1 day of feeling run-down and nauseous - the result of the
> > chemo).  I then had 2 weeks of SPDT which involved taking a
> > sensitiser for 2 days, then 1hour of whole body ultrasound
> treatment
> > followed by 25min of HIFU directly to the tumor area.  1 hour
> laying
> > under an infra-red lamp shining directly on the tumor site.
> >
> > The results in my case have been outstanding to date.  When I
left
> to
> > go to China, I had no feeling in my left arm (I could use it but
i
> > was numb from the shoulder right down to the fingertips), I had
> pain
> > under my left arm and across the left side of my chest, pain up
the
> > back of my head to behind my left ear and considerable pain along
> the
> > upper part of my spine and neck.  I was taking approximately 12-
14
> > painkillers/day to cope with the pain and to allow me a few hours
> > sleep each night.  By the time I returned to China in November
for
> > the 2nd round of treatment I had regained full feeling in my left
> > arm, no underarm and chest pain any longer, no pain up the back
of
> my
> > head and no spinal pain.  The only pain remaining was in my neck
> and
> > that feels more like a pulled muscle than anything else.
> >
> > In November 07 I returned for my second round of treatment.  I
had
> > another PET scan done that showed that almost 90% of the tumor is
> > dead (described on the report as tumor necrosis).  The original
> tumor
> > size was 5cm x 7cm x 3.5cm.  After the first round of treatment
the
> > PET scan showed only a small piece of tumor between C7 & T1 (2cm
x
> > 1.7cm)as still being active.  Furthermore, the vertebral bones
that
> > were infected now show no sign of disease.
> >
> > My second round of treatment in November consisted of
implantation
> of
> > a further 20 seeds plus chemo injected directly into the tumor
bed.
> > Once again the chemo caused some nausea and tiredness for about a
> day
> > and then I was fine.  I then had a 2nd round of SPDT as described
> > above.
> >
> > When I came back to Australia in December I was referred to Peter
> > McCallum Cancer Institute in Melbourne and am having my follow-up
> > done here.  Fortunately I have a great oncologist now that has
> > actually treated ES before.  I had a PET scan last week (Jan 8th)
> and
> > at this point in time there is no tumor activity at all.  My
> > oncologist is quietly confident that at the very least, the
disease
> > is now in remission as the orginal tumor bed is showing no
activity
> > whatsoever.  I return to Melbourne in Feb for another PET and MRI
> > scan and am following that up in late Feb with another trip to
> China
> > for another round of SPDT.
> >
> > I apologise for writing so much, but I wanted to share my story
to
> > give other ES sufferers some hope that its definately not the
death
> > sentence most of the ES prognosis I have read in journals say it
is
> > and that at the very least, with expert treatment and regular
> > followup it can be controlled.
> >
>

http://www.curesarcoma.org/

Then click on top right hand side of the website

It's great to hear such a positive outlook.  I hope this treatment
continues to be very successful!!!  Have they done any clinical trial
on this form of treatment?  Have you seen any of that data?  That
would be a great report to share!!

Good luck and please keep up up-to-date!!


--- In Epithelioid_Sarcoma@yahoogroups.com, "Andrew" <andos1969@...>
wrote:
>
> Hi there guys,
>
> I was doing a search on the web and came across your group.  My
name
> is Andrew and I was diagnosed with Proximal type Epithelioid
Sarcoma
> in June 2007.  My tumor is located in the left brachial plexus and
> extends along the vertebrae from C2 through to T2.  The sarcoma is
> also in the C3 and C4 vertebrae.
>
> I live in sunny Queensland in Australia and was originally referred
> to an Orthopedic Oncologist in Brisbane who specialises in the
> treatment of STS.  Basically I was told that the only treatment for
> my condition was surgical removal of the tumor with clear margin.
To
> achieve this, my spine was to be replaced from C2 through to T3,and
> total removal of the left para-spinal muscles.  The downside of
this
> was paraylis of my left arm (rather daunting as I am left handed),
> fusion of my neck and probable paralysis of my left hand chest
making
> it more than likely that I would eventually require assisted
> breathing.  I saw 2 spinal surgeons who both felt that there was
> approx 20-25% chance of spinal cord damage during the surgery
> resulting in anything from a funny gait when walking through to
> quadraplegia.  After the surgery the recommendation was 6 weeks of
> radiation therapy.  I was also advised that even after the surgery
> (with clear margin) and post-op radiation therapy there was a
greater
> than 60% chance that there would be a recurrence within 5yrs - most
> likely in the same general area but with a greater chance of
> metastatic disease.
>
> To be honest I weighed up the whole thing and decided against the
> surgery - valuing quality of life over quantity.  Not one to sit
> around and resign myself to dying young, (I am 39) I decided to do
my
> own research into ES and the various treatments available.  I
> discovered three things very quickly; 1. there is very little
quality
> literature available on ES - even in the medical and oncology
> journals I now subscribe to 2. very few sarcoma oncologists have
ever
> treated ES. 3. the prognosis for ES in general and proximal ES in
> particular is quite depressing.
>
> I took the advice of my family Dr and decided to not get hung up on
> the prognosis and move forward.  I was not comfortable with the
> original STS oncologist I was referred to in Brisbane for a number
of
> reasons - foremost being that he was almost impossible to get hold
of
> to ask questions, when I did manage to ask questions I was made to
> feel like I didn't need to know that information and I found him to
> be rude and arrogant.  My first disagreement with him was when he
> gave me the results of the biopsy.  I asked for a PET scan to check
> for metastatic disease and he told me point blank that he wouldn't
> order one until after the surgery as any secondaries would not be
> treated until the primary was dealt with.  Needless to say I did
get
> some pleasure in calling him after I decided not to go ahead with
the
> surgery and informing him that I had no confidence in him and would
> be looking at other treatment options with other Dr's.
>
> I was reading an article in one of the oncology journals I decided
to
> subscribe to and came across an article by a Chinese Oncologist
based
> in Guangzhao PRC, about the use of Sonic and Photodynamic Therapy
> (SPDT) in the treatment of various types of tumors.  As I had
nothing
> to loose, I managed to contact him and described my condition to
> him.  In the end I decided to go to China for treatment.  He
arranged
> for me to have ultra sounds, CT's and PET scans when I got there
and
> thankfully my ES is localised at this point in time.  You guys
would
> understand what a relief it is to be told that the tumor is
> localised.  I have had 2 cycles of treatment in China so far
> (September 07 & November 07) and go back for one final round
> (hopefully) in Feb 08.  My first round of treatment consisted of
> implantation of 50 radio seeds into the tumor area (approx 8000cGy)
> under CT guidance followed by chemotherapy injected directly into
the
> tumor.  Side effects were minimal (localised pain in the tumor site
> and 1 day of feeling run-down and nauseous - the result of the
> chemo).  I then had 2 weeks of SPDT which involved taking a
> sensitiser for 2 days, then 1hour of whole body ultrasound
treatment
> followed by 25min of HIFU directly to the tumor area.  1 hour
laying
> under an infra-red lamp shining directly on the tumor site.
>
> The results in my case have been outstanding to date.  When I left
to
> go to China, I had no feeling in my left arm (I could use it but i
> was numb from the shoulder right down to the fingertips), I had
pain
> under my left arm and across the left side of my chest, pain up the
> back of my head to behind my left ear and considerable pain along
the
> upper part of my spine and neck.  I was taking approximately 12-14
> painkillers/day to cope with the pain and to allow me a few hours
> sleep each night.  By the time I returned to China in November for
> the 2nd round of treatment I had regained full feeling in my left
> arm, no underarm and chest pain any longer, no pain up the back of
my
> head and no spinal pain.  The only pain remaining was in my neck
and
> that feels more like a pulled muscle than anything else.
>
> In November 07 I returned for my second round of treatment.  I had
> another PET scan done that showed that almost 90% of the tumor is
> dead (described on the report as tumor necrosis).  The original
tumor
> size was 5cm x 7cm x 3.5cm.  After the first round of treatment the
> PET scan showed only a small piece of tumor between C7 & T1 (2cm x
> 1.7cm)as still being active.  Furthermore, the vertebral bones that
> were infected now show no sign of disease.
>
> My second round of treatment in November consisted of implantation
of
> a further 20 seeds plus chemo injected directly into the tumor bed.
> Once again the chemo caused some nausea and tiredness for about a
day
> and then I was fine.  I then had a 2nd round of SPDT as described
> above.
>
> When I came back to Australia in December I was referred to Peter
> McCallum Cancer Institute in Melbourne and am having my follow-up
> done here.  Fortunately I have a great oncologist now that has
> actually treated ES before.  I had a PET scan last week (Jan 8th)
and
> at this point in time there is no tumor activity at all.  My
> oncologist is quietly confident that at the very least, the disease
> is now in remission as the orginal tumor bed is showing no activity
> whatsoever.  I return to Melbourne in Feb for another PET and MRI
> scan and am following that up in late Feb with another trip to
China
> for another round of SPDT.
>
> I apologise for writing so much, but I wanted to share my story to
> give other ES sufferers some hope that its definately not the death
> sentence most of the ES prognosis I have read in journals say it is
> and that at the very least, with expert treatment and regular
> followup it can be controlled.
>

Hi there guys,

I was doing a search on the web and came across your group.  My name
is Andrew and I was diagnosed with Proximal type Epithelioid Sarcoma
in June 2007.  My tumor is located in the left brachial plexus and
extends along the vertebrae from C2 through to T2.  The sarcoma is
also in the C3 and C4 vertebrae.

I live in sunny Queensland in Australia and was originally referred
to an Orthopedic Oncologist in Brisbane who specialises in the
treatment of STS.  Basically I was told that the only treatment for
my condition was surgical removal of the tumor with clear margin.  To
achieve this, my spine was to be replaced from C2 through to T3,and
total removal of the left para-spinal muscles.  The downside of this
was paraylis of my left arm (rather daunting as I am left handed),
fusion of my neck and probable paralysis of my left hand chest making
it more than likely that I would eventually require assisted
breathing.  I saw 2 spinal surgeons who both felt that there was
approx 20-25% chance of spinal cord damage during the surgery
resulting in anything from a funny gait when walking through to
quadraplegia.  After the surgery the recommendation was 6 weeks of
radiation therapy.  I was also advised that even after the surgery
(with clear margin) and post-op radiation therapy there was a greater
than 60% chance that there would be a recurrence within 5yrs - most
likely in the same general area but with a greater chance of
metastatic disease.

To be honest I weighed up the whole thing and decided against the
surgery - valuing quality of life over quantity.  Not one to sit
around and resign myself to dying young, (I am 39) I decided to do my
own research into ES and the various treatments available.  I
discovered three things very quickly; 1. there is very little quality
literature available on ES - even in the medical and oncology
journals I now subscribe to 2. very few sarcoma oncologists have ever
treated ES. 3. the prognosis for ES in general and proximal ES in
particular is quite depressing.

I took the advice of my family Dr and decided to not get hung up on
the prognosis and move forward.  I was not comfortable with the
original STS oncologist I was referred to in Brisbane for a number of
reasons - foremost being that he was almost impossible to get hold of
to ask questions, when I did manage to ask questions I was made to
feel like I didn't need to know that information and I found him to
be rude and arrogant.  My first disagreement with him was when he
gave me the results of the biopsy.  I asked for a PET scan to check
for metastatic disease and he told me point blank that he wouldn't
order one until after the surgery as any secondaries would not be
treated until the primary was dealt with.  Needless to say I did get
some pleasure in calling him after I decided not to go ahead with the
surgery and informing him that I had no confidence in him and would
be looking at other treatment options with other Dr's.

I was reading an article in one of the oncology journals I decided to
subscribe to and came across an article by a Chinese Oncologist based
in Guangzhao PRC, about the use of Sonic and Photodynamic Therapy
(SPDT) in the treatment of various types of tumors.  As I had nothing
to loose, I managed to contact him and described my condition to
him.  In the end I decided to go to China for treatment.  He arranged
for me to have ultra sounds, CT's and PET scans when I got there and
thankfully my ES is localised at this point in time.  You guys would
understand what a relief it is to be told that the tumor is
localised.  I have had 2 cycles of treatment in China so far
(September 07 & November 07) and go back for one final round
(hopefully) in Feb 08.  My first round of treatment consisted of
implantation of 50 radio seeds into the tumor area (approx 8000cGy)
under CT guidance followed by chemotherapy injected directly into the
tumor.  Side effects were minimal (localised pain in the tumor site
and 1 day of feeling run-down and nauseous - the result of the
chemo).  I then had 2 weeks of SPDT which involved taking a
sensitiser for 2 days, then 1hour of whole body ultrasound treatment
followed by 25min of HIFU directly to the tumor area.  1 hour laying
under an infra-red lamp shining directly on the tumor site.

The results in my case have been outstanding to date.  When I left to
go to China, I had no feeling in my left arm (I could use it but i
was numb from the shoulder right down to the fingertips), I had pain
under my left arm and across the left side of my chest, pain up the
back of my head to behind my left ear and considerable pain along the
upper part of my spine and neck.  I was taking approximately 12-14
painkillers/day to cope with the pain and to allow me a few hours
sleep each night.  By the time I returned to China in November for
the 2nd round of treatment I had regained full feeling in my left
arm, no underarm and chest pain any longer, no pain up the back of my
head and no spinal pain.  The only pain remaining was in my neck and
that feels more like a pulled muscle than anything else.

In November 07 I returned for my second round of treatment.  I had
another PET scan done that showed that almost 90% of the tumor is
dead (described on the report as tumor necrosis).  The original tumor
size was 5cm x 7cm x 3.5cm.  After the first round of treatment the
PET scan showed only a small piece of tumor between C7 & T1 (2cm x
1.7cm)as still being active.  Furthermore, the vertebral bones that
were infected now show no sign of disease.

My second round of treatment in November consisted of implantation of
a further 20 seeds plus chemo injected directly into the tumor bed.
Once again the chemo caused some nausea and tiredness for about a day
and then I was fine.  I then had a 2nd round of SPDT as described
above.

When I came back to Australia in December I was referred to Peter
McCallum Cancer Institute in Melbourne and am having my follow-up
done here.  Fortunately I have a great oncologist now that has
actually treated ES before.  I had a PET scan last week (Jan 8th) and
at this point in time there is no tumor activity at all.  My
oncologist is quietly confident that at the very least, the disease
is now in remission as the orginal tumor bed is showing no activity
whatsoever.  I return to Melbourne in Feb for another PET and MRI
scan and am following that up in late Feb with another trip to China
for another round of SPDT.

I apologise for writing so much, but I wanted to share my story to
give other ES sufferers some hope that its definately not the death
sentence most of the ES prognosis I have read in journals say it is
and that at the very least, with expert treatment and regular
followup it can be controlled.

Kathy - thanks again for this support/message board.

My mom's orig tumor was at the inside of her right knee/thigh. She had
surgery on that 10 years ago, and then a recurrence removed there 5
years ago. Last year she had mets to her right lung and had most of
that removed. Now she has one lymph node in her abdomen right below
the diaphragm that we are hoping will be removed. We see a surgeon on
Wed. If they won't try surgery (she has already been turned down a
couple times) then we will try cyberknife. We already met with that
doc and they will do it but feel that actual surgery is her best option
as they think that epith. sarcoma is resistant to the radiation. She
had her first 2 surgeries in Minneapolis at the Univ of MN and her lung
surg last year in Duluth, MN.

Cindy-
I am thinking about you and your son. It is hard to deal with with my
mom and I feel like it would be even worse if it were my son. I don't
have a lot of advice or anything, but please know that this can be beat
and that there are people out here pulling for him.

Becky

--- In Epithelioid_Sarcoma@yahoogroups.com, "Kathy Zuber"
<PostalAnnex6114@...> wrote:
>
> Becky, I hope your mom is doing well with her battle with this horrid
> beast!! When was she diagnosed? Where was her tumor?
>
> If I can help in any way, if just to talk, don't hesitate to contact
> me!!
>
> You'll be in my prayers.
>
>

Kathy - thanks again for this support/message board.

My mom's orig tumor was at the inside of her right knee/thigh.  She had
surgery on that 10 years ago, and then a recurrence removed there 5
years ago.  Last year she had mets to her right lung and had most of
that removed.  Now she has one lymph node in her abdomen right below
the diaphragm that we are hoping will be removed.  We see a surgeon on
Wed.  If they won't try surgery (she has already been turned down a
couple times) then we will try cyberknife.  We already met with that
doc and they will do it but feel that actual surgery is her best option
as they think that epith. sarcoma is resistant to the radiation.  She
had her first 2 surgeries in Minneapolis at the Univ of MN and her lung
surg last year in Duluth, MN.

Cindy-
I am thinking about you and your son.  It is hard to deal with with my
mom and I feel like it would be even worse if it were my son.  I don't
have a lot of advice or anything, but please know that this can be beat
and that there are people out here pulling for him.

Becky

--- In Epithelioid_Sarcoma@yahoogroups.com, "Kathy Zuber"
<PostalAnnex6114@...> wrote:
>
> Becky, I hope your mom is doing well with her battle with this horrid
> beast!!  When was she diagnosed?  Where was her tumor?
>
> If I can help in any way, if just to talk, don't hesitate to contact
> me!!
>
> You'll be in my prayers.
>
>

my son was diagnosed oct 17 07 epitheliod sarcoma in his left thumb and
pointer finger after amputation to the first joint on each they found
one lymph node 1/3 of an inch sarmoa in his armpit and removed it also
followed by 27 radiation treatments which ended today my baby is only
15 years old . our doctor says to be optimistic the lesions were small
but it had already traveled . it took 8 doctors and 10 months to get a
diagnoses . just want to let everyone know im here to listen to
anything you need to get off your chest . i truly understand the what
an emotional roller coaster is now . god bless you all , keep your head
up and continue to fight ...

Becky, I hope your mom is doing well with her battle with this horrid
beast!!  When was she diagnosed?  Where was her tumor?

If I can help in any way, if just to talk, don't hesitate to contact
me!!

You'll be in my prayers.

--- In Epithelioid_Sarcoma@yahoogroups.com, "Becky" <mauibecka@...>
wrote:
>
> I just found this link on the Sarcoma Alliance page.  THANK YOU THANK
> YOU!
>
> My mom is fighting this sarcoma and it is so hard to find info and
> people who understand.
>
> I am very sorry to learn of your daughter's death, but please know
> that every time you reach out to others with something like this, you
> are honoring her so greatly.  God bless you and again - THANK YOU!!
>
> Becky
>

I'm sorry to hear of your son's trials.  I hope all goes well and you
won't have to 'deal' much longer - just move on to watching him become
a strapping young man.

I do hope that he is being treated by a Sarcoma Specialist and a
Sarcoma Center/Clinic.  Most Oncologists don't see very many, if any,
Sarcomas during their years of practice, which means they aren't aware
of the best treatment choices for Sarcomas.

When you realize that Sarcomas account for less than 1% of ALL CANCERS
you can see how rare they are and a specialist is THE most important
thing you can do for the treatment of your son's cancer.

Sarcoma Alliance can help some with any expenses you incur while
seeking a second opinion.  That was a great help to us when Stephanie
was told that her first surgery didn't get good margins and they were
gonna have to do major muscle removal in her thigh.  She was 22 years
old, single, vibrant, her whole life ahead of her.  She didn't want to
be disfigured like that unless it was absolutely necessary.

We ended up going to NY to MSKCC for Stephanie's second opinion.
Sarcoma Alliance helped us a great deal with the expenses.

My prayers and support are with you.

--- In Epithelioid_Sarcoma@yahoogroups.com, "cindy" <dunster40@...>
wrote:
>
> my son was diagnosed oct 17 07 epitheliod sarcoma in his left thumb
and
> pointer finger after amputation to the first joint on each they found
> one lymph node 1/3 of an inch sarmoa in his armpit and removed it
also
> followed by 27 radiation treatments which ended today my baby is only
> 15 years old . our doctor says to be optimistic the lesions were
small
> but it had already traveled . it took 8 doctors and 10 months to get
a
> diagnoses . just want to let everyone know im here to listen to
> anything you need to get off your chest . i truly understand the what
> an emotional roller coaster is now . god bless you all , keep your
head
> up and continue to fight ...
>

my son was diagnosed oct 17 07 epitheliod sarcoma in his left thumb and
pointer finger after amputation to the first joint on each they found
one lymph node 1/3 of an inch sarmoa in his armpit and removed it also
followed by 27 radiation treatments which ended today my baby is only
15 years old . our doctor says to be optimistic the lesions were small
but it had already traveled . it took 8 doctors and 10 months to get a
diagnoses . just want to let everyone know im here to listen to
anything you need to get off your chest . i truly understand the what
an emotional roller coaster is now . god bless you all , keep your head
up and continue to fight ...

I just found this link on the Sarcoma Alliance page.  THANK YOU THANK
YOU!

My mom is fighting this sarcoma and it is so hard to find info and
people who understand.

I am very sorry to learn of your daughter's death, but please know
that every time you reach out to others with something like this, you
are honoring her so greatly.  God bless you and again - THANK YOU!!

Becky

I have started this site to help those touched by Epithelioid Sarcoma.
I've included the story of our daughter, Stephanie.  She was originally
diagnosed in Dec., 2000.  She died Aug. 23, 2006.

I'd like to offer anything I've learned over those long 7 years.  I
don't really know where to begin, so I figure you can just ask.

I've included several links - I especially liked the Moss report.  Back
in 2000 I couldn't find hardly anything about Epithelioid Sarcoma!!  I
think I found 2 very clinical reports that scared me something awful.

Now we have the Sarcoma Alliance for support and so much more.