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#3317 From: "uswoods5" <uswoods5@...>
Date: Tue Mar 1, 2011 12:03 pm
Subject: Re: NIH "Genetic Aspects of Choroma" Study. uswoods5
Send Email

Here it is. You qualify if you have a diagnosis of chordoma, do not have anyone in the family who has had chordoma, and live in the USA or Canada.

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

Make sure you phone in for your kit for the sporadic study here:

http://dceg.cancer.gov/geb/research/activeclinical/chordoma [scroll down] or call toll-free 1-800-518-8474 and ask to speak with Ms. Stephanie Steinbart about the Non-Familial Chordoma Study. She is a research nurse who can answer your questions and provide additional information about this study.

I'm waiting for my pot now. We seem to have kept them pretty busy. And don't forget to use the sample pot and mail it back.

Please don't forget my survey, at http://www.surveymonkey.com/s/HZMLHRW I'll be meeting the doctor at the end of the month, and I'm going to need a couple of days to download the survey results. Please help to get him really interested in doing a professional study.

Thank you!
Ann

Reply | Messages in this Topic (8)

#3318 From: "Melanie" <mellimelwithchordoma@...>
Date: Tue Mar 1, 2011 12:27 pm
Subject: Re: NIH "Genetic Aspects of Choroma" Study. mellimelwith...
Send Email

it took me serveral weeks to get everything too,,glad i could do something,
there is a contact info on paperwork if there was any questions or concerns,i
hope everyone got a chance to do it!

Reply | Messages in this Topic (8)

#3319 From: "steelers_girl3" <dopyskizer420@...>
Date: Wed Mar 2, 2011 5:45 pm
Subject: (No subject) steelers_girl3
Send Email

HI,

I'm new to this. my boyfriend is 27 and recently got diagnosed with  chordoma on
the sacrum.  he has had pain in his leg off and on since last august and we
thought that he might have pulled his hamstring but it might have been this the
whole time. i told him that he needs to get a pet scan to make sure nothing has
spread but he wont listen. Is there any chance that it could have spread already
to other parts of the body? i am so scared and worried and reading things online
only makes it worse. is there any advice you can give me or insight on what is
going to come.

Thanks

nicole

Reply | Messages in this Topic (1)

#3320 From: desti625@...
Date: Wed Mar 2, 2011 2:10 pm
Subject: Re: (unknown) ladonna.hoyt
Send Email

Hello Nicole,

Sorry to hear about your boyfriend's tumor. The diagnosis is always so shocking, it takes a while for the news to sink in. You are doing the right thing to research and talking about it. Knowledge is power! But don't let it frighten you, as far as the metastasis goes. That does not happen in every case. In fact it usually doesn't happen at all. If your boyfriend is seeing a dr who has chordoma experience, he may decide that a full-body MRI is required as a precaution. And that may depend on the size and location of the tumor, as to whether or not it looks like it's been there long enough to have spread. Try not to panic. It's worthwhile asking the dr about it, though.

My chordoma was (mostly) removed in Nov 2002 and since then I've had follow-up MRIs twice a year. But during all that time I only had a full body scan twice, even though I still had some tumor remaining. That's because my dr was experienced enough to know my remaining tumor didn't show any characteristics of one that might have spread.

Good luck to your boyfriend, and try to remain positive! Informed, but positive!

LaDonna

In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time, dopyskizer420@... writes:

HI,

I'm new to this. my boyfriend is 27 and recently got diagnosed with chordoma on the sacrum. he has had pain in his leg off and on since last august and we thought that he might have pulled his hamstring but it might have been this the whole time. i told him that he needs to get a pet scan to make sure nothing has spread but he wont listen. Is there any chance that it could have spread already to other parts of the body? i am so scared and worried and reading things online only makes it worse. is there any advice you can give me or insight on what is going to come.

Thanks

nicole

Reply | Messages in this Topic (64)

#3322 From: "ShaneK" <shaneknee@...>
Date: Wed Mar 2, 2011 8:15 pm
Subject: Re: (unknown) shaneknee
Send Email

Dear Nicole:

I echo LaDonna's thoughts and will add my own. I politely hope you read through
my list carefully.

1.) Your boyfriend and you will most likely get a lot of dire information from
your doctor(s) and the Internet regarding his prognosis.

IGNORE ALL OF IT.

Why?

Because the TRUTH is; there are VERY FEW institutions that can treat sacral
chordoma successfully because it's so rare, thus most have little or no
experience. The few medical institutions (with their handful of surgeons, who
most of us on this forum know) that are experts with with sacral chordoma due to
the fact they see the bulk of chordoma patients (dozens a year)...they have a
VERY HIGH SUCCESS RATE of treating this neoplasm thus allowing their patients to
get on with their lives. Unfortunately, the medical institutions who rarely see
this type of cancer, will tell you they can treat it...BUT THEY CANNOT...and the
statistics they will cite or that you will read about on the Web, will be very
dismal, because those institutions ARE NOT QUALIFIED TO TREAT this disease, thus
they have low success rates. Being a neurosurgeon, even a good one...does not
automatically qualify one to treat sacral chordoma. PERIOD!

2.) Your situation is not a "sprint"...it's a "marathon"...meaning that with the
right advice and surgical team...your boyfriend will very most likely be okay.

3.) The difference between surviving sacral chordoma and having a long term
prognosis...comes down to the medical institution and surgical team one chooses.
Most of us agree here which institutions and which surgeons are the ones to
consult. Most of them will consult with you via the phone initially, if you live
too far away for an in-person consult. This means, you can send your MRI disc
and records and they will tell you the next steps.

4.) Johns Hopkins - Dr. Ziya Gokaslan

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
\
iles/team_member_profile/E7E90E2E77A0DD19390F681642BE6820/Ziya_Gokaslan

and Dr. Dr. Jean-Paul Wolinsky

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
\
iles/team_member_profile/3D54B9FD83E8153E510B4FD161DE61B7/Jean-Paul_Wolinsky

MD Anderson - Dr. Laurence D. Rhines (who trained under Dr. Gokaslan)

http://faculty.mdanderson.org/Laurence_Rhines/Default.asp?SNID=543122987

Canada - Ask Ann who is the admin of this board.

You may call me directly, as I can help facilitate a quick introduction with the
team at Hopkins so you don't have to wait through the traditional channels.
Others I'm sure will also offer to help. Take them/me up on the offer.

Shane Knee 301.370.8165

This forum, its administrator Ann, and its members...saved my life and have done
so for countless others, literally. I was told I was terminal, and the operation
that was going to be performed by another renowned cancer institute, would have
killed me. I would not be here today, if it wasn't for the advice and path given
here.

Peace and God's blessings....
Shane

--- In Chordoma_Support_Group@..., desti625@... wrote:
>
> Hello Nicole,
>
> Sorry to hear about your boyfriend's tumor.  The diagnosis is always  so
> shocking, it takes a while for the news to sink in.  You are doing the  right
> thing to research and talking about it.  Knowledge is power!   But don't let
> it frighten you, as far as the metastasis goes.  That does  not happen in
> every case.  In fact it usually doesn't happen at all.   If your boyfriend is
> seeing a dr who has chordoma experience, he may decide that  a full-body
> MRI is required as a precaution.  And that may depend on the  size and
> location of the tumor, as to whether or not it looks like it's been  there
long
> enough to have spread.  Try not to panic.  It's worthwhile  asking the dr
about
> it, though.
>
> My chordoma was (mostly) removed in Nov 2002 and since then I've had
> follow-up MRIs twice a year.  But during all that time I only had a full  body
> scan twice, even though I still had some tumor remaining.  That's  because my
> dr was experienced enough to know my remaining tumor didn't  show any
> characteristics of one that might have spread.
>
> Good luck to your boyfriend, and try to remain positive!  Informed,  but
> positive!
>
> LaDonna
>
>
>
> In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time,
> dopyskizer420@... writes:
>
>
>
>
> HI,
>
> I'm new to this. my boyfriend is 27 and recently got diagnosed  with
> chordoma on the sacrum. he has had pain in his leg off and on since last 
august
> and we thought that he might have pulled his hamstring but it might  have
> been this the whole time. i told him that he needs to get a pet scan to  make
> sure nothing has spread but he wont listen. Is there any chance that it
> could have spread already to other parts of the body? i am so scared and
> worried and reading things online only makes it worse. is there any advice you
> can give me or insight on what is going to come.
>
> Thanks
>
> nicole
>

Reply | Messages in this Topic (64)

#3323 From: "susan" <sljones23@...>
Date: Wed Mar 2, 2011 9:34 pm
Subject: Re: (unknown) sljones23
Send Email

Hi Nicole,
I know what you are feeling and it is overwhelming. BUT, we both found this
group, and we must have faith that there was a reason
for us to be led to such knowledgable and caring people. We will be traveling to
Johns Hopkins for the Sacral resection , Surgury to be on March 14th. I will
need support and prayers for my husband Tom. Thank you all that have talked with
him. This is very scary, but the more you educate yourself the better you will
be. I agree that you should NOT listen to Drs. that are not experts. We did at
1st, and that info. is still floating in my head. I wish I had never had those
conversations.
Shane( THANKS!!!!) has a list of questions that were quite helpful for our
initial consultation with Johns Hopkins( Dr. Wolinsky)
If you have any questions or just need to vent, feel free to call or e-mail.

Remain positive!,
Susan and Tom Butcher
918-645-9063


Chordoma_Support_Group@..., "ShaneK" <shaneknee@...> wrote:
>
> Dear Nicole:
>
> I echo LaDonna's thoughts and will add my own. I politely hope you read
through
> my list carefully.
>
> 1.) Your boyfriend and you will most likely get a lot of dire information from
> your doctor(s) and the Internet regarding his prognosis.
>
> IGNORE ALL OF IT.
>
> Why?
>
> Because the TRUTH is; there are VERY FEW institutions that can treat sacral
> chordoma successfully because it's so rare, thus most have little or no
> experience. The few medical institutions (with their handful of surgeons, who
> most of us on this forum know) that are experts with with sacral chordoma due
to
> the fact they see the bulk of chordoma patients (dozens a year)...they have a
> VERY HIGH SUCCESS RATE of treating this neoplasm thus allowing their patients
to
> get on with their lives. Unfortunately, the medical institutions who rarely
see
> this type of cancer, will tell you they can treat it...BUT THEY CANNOT...and
the
> statistics they will cite or that you will read about on the Web, will be very
> dismal, because those institutions ARE NOT QUALIFIED TO TREAT this disease,
thus
> they have low success rates. Being a neurosurgeon, even a good one...does not
> automatically qualify one to treat sacral chordoma. PERIOD!
>
> 2.) Your situation is not a "sprint"...it's a "marathon"...meaning that with
the
> right advice and surgical team...your boyfriend will very most likely be okay.
>
> 3.) The difference between surviving sacral chordoma and having a long term
> prognosis...comes down to the medical institution and surgical team one
chooses.
> Most of us agree here which institutions and which surgeons are the ones to
> consult. Most of them will consult with you via the phone initially, if you
live
> too far away for an in-person consult. This means, you can send your MRI disc
> and records and they will tell you the next steps.
>
> 4.) Johns Hopkins - Dr. Ziya Gokaslan
>
>
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
\
> iles/team_member_profile/E7E90E2E77A0DD19390F681642BE6820/Ziya_Gokaslan
>
> and Dr. Dr. Jean-Paul Wolinsky
>
>
http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
\
> iles/team_member_profile/3D54B9FD83E8153E510B4FD161DE61B7/Jean-Paul_Wolinsky
>
> MD Anderson - Dr. Laurence D. Rhines (who trained under Dr. Gokaslan)
>
> http://faculty.mdanderson.org/Laurence_Rhines/Default.asp?SNID=543122987
>
> Canada - Ask Ann who is the admin of this board.
>
> You may call me directly, as I can help facilitate a quick introduction with
the
> team at Hopkins so you don't have to wait through the traditional channels.
> Others I'm sure will also offer to help. Take them/me up on the offer.
>
> Shane Knee 301.370.8165
>
>
> This forum, its administrator Ann, and its members...saved my life and have
done
> so for countless others, literally. I was told I was terminal, and the
operation
> that was going to be performed by another renowned cancer institute, would
have
> killed me. I would not be here today, if it wasn't for the advice and path
given
> here.
>
> Peace and God's blessings....
> Shane
>
> --- In Chordoma_Support_Group@..., desti625@ wrote:
> >
> > Hello Nicole,
> >
> > Sorry to hear about your boyfriend's tumor.  The diagnosis is always  so
> > shocking, it takes a while for the news to sink in.  You are doing the 
right
> > thing to research and talking about it.  Knowledge is power!   But don't let
> > it frighten you, as far as the metastasis goes.  That does  not happen in
> > every case.  In fact it usually doesn't happen at all.   If your boyfriend
is
> > seeing a dr who has chordoma experience, he may decide that  a full-body
> > MRI is required as a precaution.  And that may depend on the  size and
> > location of the tumor, as to whether or not it looks like it's been  there
long
> > enough to have spread.  Try not to panic.  It's worthwhile  asking the dr
about
> > it, though.
> >
> > My chordoma was (mostly) removed in Nov 2002 and since then I've had
> > follow-up MRIs twice a year.  But during all that time I only had a full 
body
> > scan twice, even though I still had some tumor remaining.  That's  because
my
> > dr was experienced enough to know my remaining tumor didn't  show any
> > characteristics of one that might have spread.
> >
> > Good luck to your boyfriend, and try to remain positive!  Informed,  but
> > positive!
> >
> > LaDonna
> >
> >
> >
> > In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time,
> > dopyskizer420@ writes:
> >
> >
> >
> >
> > HI,
> >
> > I'm new to this. my boyfriend is 27 and recently got diagnosed  with
> > chordoma on the sacrum. he has had pain in his leg off and on since last 
august
> > and we thought that he might have pulled his hamstring but it might  have
> > been this the whole time. i told him that he needs to get a pet scan to 
make
> > sure nothing has spread but he wont listen. Is there any chance that it
> > could have spread already to other parts of the body? i am so scared and
> > worried and reading things online only makes it worse. is there any advice
you
> > can give me or insight on what is going to come.
> >
> > Thanks
> >
> > nicole
> >
>

Reply | Messages in this Topic (64)

#3324 From: nikki lee <dopyskizer420@...>
Date: Wed Mar 2, 2011 9:55 pm
Subject: Re: Re: (unknown) steelers_girl3
Send Email

hi susan

hes going on march 14th up to boston for his first consultation with the chordoma group. Everything is just so frustrating right now. my first reaction was we need this out and we need it out now and i couldn't understand why we are waiting around. i feel like this tumor is just eating him slowly everyday. I live in pittsburgh where there are some of the best doctors but there isn't anyone that specializes in chordoma like the borges group. right now we are just like sitting ducks waiting around for the next 2 weeks. i would love that list to give to him. Unfortunately i can't go with him because of my son and work but i can pass it on to him.

thanks

--- On Wed, 3/2/11, susan <sljones23@...> wrote:

From: susan <sljones23@...>
Subject: [Chordoma_Support_Group] Re: (unknown)
To: Chordoma_Support_Group@...
Date: Wednesday, March 2, 2011, 4:34 PM

Hi Nicole,
I know what you are feeling and it is overwhelming. BUT, we both found this group, and we must have faith that there was a reason
for us to be led to such knowledgable and caring people. We will be traveling to Johns Hopkins for the Sacral resection , Surgury to be on March 14th. I will need support and prayers for my husband Tom. Thank you all that have talked with him. This is very scary, but the more you educate yourself the better you will be. I agree that you should NOT listen to Drs. that are not experts. We did at 1st, and that info. is still floating in my head. I wish I had never had those conversations.
Shane( THANKS!!!!) has a list of questions that were quite helpful for our initial consultation with Johns Hopkins( Dr. Wolinsky)
If you have any questions or just need to vent, feel free to call or e-mail.

Remain positive!,
Susan and Tom Butcher
918-645-9063

Chordoma_Support_Group@..., "ShaneK" <shaneknee@...> wrote:
>
> Dear Nicole:
>
> I echo LaDonna's thoughts and will add my own. I politely hope you read through
> my list carefully.
>
> 1.) Your boyfriend and you will most likely get a lot of dire information from
> your doctor(s) and the Internet regarding his prognosis.
>
> IGNORE ALL OF IT.
>
> Why?
>
> Because the TRUTH is; there are VERY FEW institutions that can treat sacral
> chordoma successfully because it's so rare, thus most have little or no
> experience. The few medical institutions (with their handful of surgeons, who
> most of us on this forum know) that are experts with with sacral chordoma due to
> the fact they see the bulk of chordoma patients (dozens a year)...they have a
> VERY HIGH SUCCESS RATE of treating this neoplasm thus allowing their patients to
> get on with their lives. Unfortunately, the medical institutions who rarely see
> this type of cancer, will tell you they can treat it...BUT THEY CANNOT...and the
> statistics they will cite or that you will read about on the Web, will be very
> dismal, because those institutions ARE NOT QUALIFIED TO TREAT this disease, thus
> they have low success rates. Being a neurosurgeon, even a good one...does not
> automatically qualify one to treat sacral chordoma. PERIOD!
>
> 2.) Your situation is not a "sprint"...it's a "marathon"...meaning that with the
> right advice and surgical team...your boyfriend will very most likely be okay.
>
> 3.) The difference between surviving sacral chordoma and having a long term
> prognosis...comes down to the medical institution and surgical team one chooses.
> Most of us agree here which institutions and which surgeons are the ones to
> consult. Most of them will consult with you via the phone initially, if you live
> too far away for an in-person consult. This means, you can send your MRI disc
> and records and they will tell you the next steps.
>
> 4.) Johns Hopkins - Dr. Ziya Gokaslan
>
> http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
> iles/team_member_profile/E7E90E2E77A0DD19390F681642BE6820/Ziya_Gokaslan
>
> and Dr. Dr. Jean-Paul Wolinsky
>
> http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
> iles/team_member_profile/3D54B9FD83E8153E510B4FD161DE61B7/Jean-Paul_Wolinsky
>
> MD Anderson - Dr. Laurence D. Rhines (who trained under Dr. Gokaslan)
>
> http://faculty.mdanderson.org/Laurence_Rhines/Default.asp?SNID=543122987
>
> Canada - Ask Ann who is the admin of this board.
>
> You may call me directly, as I can help facilitate a quick introduction with the
> team at Hopkins so you don't have to wait through the traditional channels.
> Others I'm sure will also offer to help. Take them/me up on the offer.
>
> Shane Knee 301.370.8165
>
>
> This forum, its administrator Ann, and its members...saved my life and have done
> so for countless others, literally. I was told I was terminal, and the operation
> that was going to be performed by another renowned cancer institute, would have
> killed me. I would not be here today, if it wasn't for the advice and path given
> here.
>
> Peace and God's blessings....
> Shane
>
> --- In Chordoma_Support_Group@..., desti625@ wrote:
> >
> > Hello Nicole,
> >
> > Sorry to hear about your boyfriend's tumor. The diagnosis is always so
> > shocking, it takes a while for the news to sink in. You are doing the right
> > thing to research and talking about it. Knowledge is power! But don't let
> > it frighten you, as far as the metastasis goes. That does not happen in
> > every case. In fact it usually doesn't happen at all. If your boyfriend is
> > seeing a dr who has chordoma experience, he may decide that a full-body
> > MRI is required as a precaution. And that may depend on the size and
> > location of the tumor, as to whether or not it looks like it's been there long
> > enough to have spread. Try not to panic. It's worthwhile asking the dr about
> > it, though.
> >
> > My chordoma was (mostly) removed in Nov 2002 and since then I've had
> > follow-up MRIs twice a year. But during all that time I only had a full body
> > scan twice, even though I still had some tumor remaining. That's because my
> > dr was experienced enough to know my remaining tumor didn't show any
> > characteristics of one that might have spread.
> >
> > Good luck to your boyfriend, and try to remain positive! Informed, but
> > positive!
> >
> > LaDonna
> >
> >
> >
> > In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time,
> > dopyskizer420@ writes:
> >
> >
> >
> >
> > HI,
> >
> > I'm new to this. my boyfriend is 27 and recently got diagnosed with
> > chordoma on the sacrum. he has had pain in his leg off and on since last august
> > and we thought that he might have pulled his hamstring but it might have
> > been this the whole time. i told him that he needs to get a pet scan to make
> > sure nothing has spread but he wont listen. Is there any chance that it
> > could have spread already to other parts of the body? i am so scared and
> > worried and reading things online only makes it worse. is there any advice you
> > can give me or insight on what is going to come.
> >
> > Thanks
> >
> > nicole
> >
>

Reply | Messages in this Topic (64)

#3325 From: "Carol Coombs" <carolcoombs@...>
Date: Thu Mar 3, 2011 10:31 am
Subject: Boston here I come carol.coombs
Send Email

Yippee, Boston here I come.
I have received a grant from the Australian government that will allow me to fly
to Boston Mass General to have proton beam therapy. This means another chance
maybe to rid of this horrible thing. Look out USA here I come 21st March. It's a
shame it couldn't be a week earlier and we could have gone to the Chordoma
conference.
Carol

Reply | Messages in this Topic (18)

#3326 From: "uswoods5" <uswoods5@...>
Date: Thu Mar 3, 2011 11:29 am
Subject: Re: Boston here I come uswoods5
Send Email

Great, it may have stopped snowing by then.

Seriously, I had a good time in Boston, fitting in the proton beam in my spare
time. Make sure you see some of the city too.
Ann

Reply | Messages in this Topic (18)

#3327 From: "uswoods5" <uswoods5@...>
Date: Thu Mar 3, 2011 11:34 am
Subject: Re: (unknown) uswoods5
Send Email

Primary chordoma is slow.

Mine showed up on an x-ray three years before diagnosis [no thanks to the idiot
who decided my skull wasn't fractured but didn't wonder about the big, highly
visible blobs]and it hadn't grown much in those years.

All the best with it all.
Ann

Reply | Messages in this Topic (64)

#3328 From: Austin Moore <amoore5535@...>
Date: Thu Mar 3, 2011 2:46 pm
Subject: Re: Re: (unknown) amoore5535
Send Email

I had a sucessful "resection" , good margins, no recurrence, etc, at the Mayo Clinic-Dr. Frank Sim

Austin

From: ShaneK <shaneknee@...>
To: Chordoma_Support_Group@...
Sent: Wed, March 2, 2011 2:15:58 PM
Subject: [Chordoma_Support_Group] Re: (unknown)

Dear Nicole:

I echo LaDonna's thoughts and will add my own. I politely hope you read through
my list carefully.

1.) Your boyfriend and you will most likely get a lot of dire information from
your doctor(s) and the Internet regarding his prognosis.

IGNORE ALL OF IT.

Why?

Because the TRUTH is; there are VERY FEW institutions that can treat sacral
chordoma successfully because it's so rare, thus most have little or no
experience. The few medical institutions (with their handful of surgeons, who
most of us on this forum know) that are experts with with sacral chordoma due to
the fact they see the bulk of chordoma patients (dozens a year)...they have a
VERY HIGH SUCCESS RATE of treating this neoplasm thus allowing their patients to
get on with their lives. Unfortunately, the medical institutions who rarely see
this type of cancer, will tell you they can treat it...BUT THEY CANNOT...and the
statistics they will cite or that you will read about on the Web, will be very
dismal, because those institutions ARE NOT QUALIFIED TO TREAT this disease, thus
they have low success rates. Being a neurosurgeon, even a good one...does not
automatically qualify one to treat sacral chordoma. PERIOD!

2.) Your situation is not a "sprint"...it's a "marathon"...meaning that with the
right advice and surgical team...your boyfriend will very most likely be okay.

3.) The difference between surviving sacral chordoma and having a long term
prognosis...comes down to the medical institution and surgical team one chooses.
Most of us agree here which institutions and which surgeons are the ones to
consult. Most of them will consult with you via the phone initially, if you live
too far away for an in-person consult. This means, you can send your MRI disc
and records and they will tell you the next steps.

4.) Johns Hopkins - Dr. Ziya Gokaslan

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/profiles/team_member_profile/E7E90E2E77A0DD19390F681642BE6820/Ziya_Gokaslan

and Dr. Dr. Jean-Paul Wolinsky

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/profiles/team_member_profile/3D54B9FD83E8153E510B4FD161DE61B7/Jean-Paul_Wolinsky

MD Anderson - Dr. Laurence D. Rhines (who trained under Dr. Gokaslan)

http://faculty.mdanderson.org/Laurence_Rhines/Default.asp?SNID=543122987

Canada - Ask Ann who is the admin of this board.

You may call me directly, as I can help facilitate a quick introduction with the
team at Hopkins so you don't have to wait through the traditional channels.
Others I'm sure will also offer to help. Take them/me up on the offer.

Shane Knee 301.370.8165

This forum, its administrator Ann, and its members...saved my life and have done
so for countless others, literally. I was told I was terminal, and the operation
that was going to be performed by another renowned cancer institute, would have
killed me. I would not be here today, if it wasn't for the advice and path given
here.

Peace and God's blessings....
Shane

--- In Chordoma_Support_Group@..., desti625@... wrote:
>
> Hello Nicole,
>
> Sorry to hear about your boyfriend's tumor. The diagnosis is always so
> shocking, it takes a while for the news to sink in. You are doing the right
> thing to research and talking about it. Knowledge is power! But don't let
> it frighten you, as far as the metastasis goes. That does not happen in
> every case. In fact it usually doesn't happen at all. If your boyfriend is
> seeing a dr who has chordoma experience, he may decide that a full-body
> MRI is required as a precaution. And that may depend on the size and
> location of the tumor, as to whether or not it looks like it's been there long
> enough to have spread. Try not to panic. It's worthwhile asking the dr about
> it, though.
>
> My chordoma was (mostly) removed in Nov 2002 and since then I've had
> follow-up MRIs twice a year. But during all that time I only had a full body
> scan twice, even though I still had some tumor remaining. That's because my
> dr was experienced enough to know my remaining tumor didn't show any
> characteristics of one that might have spread.
>
> Good luck to your boyfriend, and try to remain positive! Informed, but
> positive!
>
> LaDonna
>
>
>
> In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time,
> dopyskizer420@... writes:
>
>
>
>
> HI,
>
> I'm new to this. my boyfriend is 27 and recently got diagnosed with
> chordoma on the sacrum. he has had pain in his leg off and on since last august
> and we thought that he might have pulled his hamstring but it might have
> been this the whole time. i told him that he needs to get a pet scan to make
> sure nothing has spread but he wont listen. Is there any chance that it
> could have spread already to other parts of the body? i am so scared and
> worried and reading things online only makes it worse. is there any advice you
> can give me or insight on what is going to come.
>
> Thanks
>
> nicole
>

Reply | Messages in this Topic (64)

#3329 From: shozgirl@...
Date: Thu Mar 3, 2011 11:05 am
Subject: Re: Boston here I come shoozgirl
Send Email

Carol: that is great news. I think its wonderful that some countries have this arrangement. Good Luck in Boston and keep us posted. Its a great city and the hospital gives free passes to patients for local museums etc. There are wonderful resource centers with tons of information as well as crafts and free classes/ Support groups as well. You will be entitled to low cost accupuncture, massage...but sign up early as they fill up. Say hi to Dr Liebsch!

Sharon/NYC

**~~**~~**~~**~~**~~**~~**
Together We Will Cure Chordoma.
Visit www.Chordoma.org to invest in a cure

In a message dated 3/3/2011 5:31:41 A.M. Eastern Standard Time, carolcoombs@... writes:

Yippee, Boston here I come.
I have received a grant from the Australian government that will allow me to fly to Boston Mass General to have proton beam therapy. This means another chance maybe to rid of this horrible thing. Look out USA here I come 21st March. It's a shame it couldn't be a week earlier and we could have gone to the Chordoma conference.
Carol

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Reply | Messages in this Topic (18)

#3330 From: "Dr. Raphael A. Vigna" <drralphvigna@...>
Date: Thu Mar 3, 2011 4:54 pm
Subject: Re: Re: (unknown) drralphvigna
Send Email

I also had a successful "resection" (sacral chordoma 10x13x9cms), good margins, etc., at Vancouver General Hospital, Vancouver Canada--Dr. Michael Boyd and team!

Ralph
La mia casa e il mondo
drralphvigna@...

From: Austin Moore <amoore5535@...>
To: Chordoma_Support_Group@...
Sent: Thu, March 3, 2011 6:46:14 AM
Subject: Re: [Chordoma_Support_Group] Re: (unknown)

I had a sucessful "resection" , good margins, no recurrence, etc, at the Mayo Clinic-Dr. Frank Sim

Austin

From: ShaneK <shaneknee@...>
To: Chordoma_Support_Group@...
Sent: Wed, March 2, 2011 2:15:58 PM
Subject: [Chordoma_Support_Group] Re: (unknown)

Reply | Messages in this Topic (64)

#3331 From: desti625@...
Date: Thu Mar 3, 2011 2:20 pm
Subject: Re: Re: (unknown) ladonna.hoyt
Send Email

Ann, I'd forgotten that you had that happen to you too. We're twins in that way, my first MRI in 1998 clearly showed my tumor, but it wasn't detected until a second MRI was performed 3 years later. At that time the two results were compared, and voila! There was the tumor 3 years earlier! I wasn't very happy about that, had suffered a lot during that 3 year period! And it's not as if my tumor was little either, it was 2 cm x 5 cm x 4cm. That's not big when compared to sacrum tumors, but in the head it's a big size.

LaDonna

In a message dated 3/3/2011 5:34:39 A.M. Central Standard Time, uswoods5@... writes:

Primary chordoma is slow.

Mine showed up on an x-ray three years before diagnosis [no thanks to the idiot who decided my skull wasn't fractured but didn't wonder about the big, highly visible blobs]and it hadn't grown much in those years.

All the best with it all.
Ann

Reply | Messages in this Topic (64)

#3332 From: Anne Vigil <anne@...>
Date: Thu Mar 3, 2011 7:33 pm
Subject: Re: Re: (unknown) acvigil...
Send Email

Nikki,

I am 5 months out from my surgery for sacral chordoma. I have been managed at Mass General in Boston and I loved all of my doctors and nurses. They know what they are doing. They are worth the wait. I will keep you and your family in my prayers.

Take Care,
Anne/St. Louis

On 3/2/2011 3:55 PM, nikki lee wrote:

hi susan

hes going on march 14th up to boston for his first consultation with the chordoma group. Everything is just so frustrating right now. my first reaction was we need this out and we need it out now and i couldn't understand why we are waiting around. i feel like this tumor is just eating him slowly everyday. I live in pittsburgh where there are some of the best doctors but there isn't anyone that specializes in chordoma like the borges group. right now we are just like sitting ducks waiting around for the next 2 weeks. i would love that list to give to him. Unfortunately i can't go with him because of my son and work but i can pass it on to him.

thanks

--- On Wed, 3/2/11, susan <sljones23@...> wrote:

From: susan <sljones23@...>
Subject: [Chordoma_Support_Group] Re: (unknown)
To: Chordoma_Support_Group@...
Date: Wednesday, March 2, 2011, 4:34 PM

Hi Nicole,
I know what you are feeling and it is overwhelming. BUT, we both found this group, and we must have faith that there was a reason
for us to be led to such knowledgable and caring people. We will be traveling to Johns Hopkins for the Sacral resection , Surgury to be on March 14th. I will need support and prayers for my husband Tom. Thank you all that have talked with him. This is very scary, but the more you educate yourself the better you will be. I agree that you should NOT listen to Drs. that are not experts. We did at 1st, and that info. is still floating in my head. I wish I had never had those conversations.
Shane( THANKS!!!!) has a list of questions that were quite helpful for our initial consultation with Johns Hopkins( Dr. Wolinsky)
If you have any questions or just need to vent, feel free to call or e-mail.

Remain positive!,
Susan and Tom Butcher
918-645-9063

Chordoma_Support_Group@..., "ShaneK" <shaneknee@...> wrote:
>
> Dear Nicole:
>
> I echo LaDonna's thoughts and will add my own. I politely hope you read through
> my list carefully.
>
> 1.) Your boyfriend and you will most likely get a lot of dire information from
> your doctor(s) and the Internet regarding his prognosis.
>
> IGNORE ALL OF IT.
>
> Why?
>
> Because the TRUTH is; there are VERY FEW institutions that can treat sacral
> chordoma successfully because it's so rare, thus most have little or no
> experience. The few medical institutions (with their handful of surgeons, who
> most of us on this forum know) that are experts with with sacral chordoma due to
> the fact they see the bulk of chordoma patients (dozens a year)...they have a
> VERY HIGH SUCCESS RATE of treating this neoplasm thus allowing their patients to
> get on with their lives. Unfortunately, the medical institutions who rarely see
> this type of cancer, will tell you they can treat it...BUT THEY CANNOT...and the
> statistics they will cite or that you will read about on the Web, will be very
> dismal, because those institutions ARE NOT QUALIFIED TO TREAT this disease, thus
> they have low success rates. Being a neurosurgeon, even a good one...does not
> automatically qualify one to treat sacral chordoma. PERIOD!
>
> 2.) Your situation is not a "sprint"...it's a "marathon"...meaning that with the
> right advice and surgical team...your boyfriend will very most likely be okay.
>
> 3.) The difference between surviving sacral chordoma and having a long term
> prognosis...comes down to the medical institution and surgical team one chooses.
> Most of us agree here which institutions and which surgeons are the ones to
> consult. Most of them will consult with you via the phone initially, if you live
> too far away for an in-person consult. This means, you can send your MRI disc
> and records and they will tell you the next steps.
>
> 4.) Johns Hopkins - Dr. Ziya Gokaslan
>
> http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
> iles/team_member_profile/E7E90E2E77A0DD19390F681642BE6820/Ziya_Gokaslan
>
> and Dr. Dr. Jean-Paul Wolinsky
>
> http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/spine/prof\
> iles/team_member_profile/3D54B9FD83E8153E510B4FD161DE61B7/Jean-Paul_Wolinsky
>
> MD Anderson - Dr. Laurence D. Rhines (who trained under Dr. Gokaslan)
>
> http://faculty.mdanderson.org/Laurence_Rhines/Default.asp?SNID=543122987
>
> Canada - Ask Ann who is the admin of this board.
>
> You may call me directly, as I can help facilitate a quick introduction with the
> team at Hopkins so you don't have to wait through the traditional channels.
> Others I'm sure will also offer to help. Take them/me up on the offer.
>
> Shane Knee 301.370.8165
>
>
> This forum, its administrator Ann, and its members...saved my life and have done
> so for countless others, literally. I was told I was terminal, and the operation
> that was going to be performed by another renowned cancer institute, would have
> killed me. I would not be here today, if it wasn't for the advice and path given
> here.
>
> Peace and God's blessings....
> Shane
>
> --- In Chordoma_Support_Group@..., desti625@ wrote:
> >
> > Hello Nicole,
> >
> > Sorry to hear about your boyfriend's tumor. The diagnosis is always so
> > shocking, it takes a while for the news to sink in. You are doing the right
> > thing to research and talking about it. Knowledge is power! But don't let
> > it frighten you, as far as the metastasis goes. That does not happen in
> > every case. In fact it usually doesn't happen at all. If your boyfriend is
> > seeing a dr who has chordoma experience, he may decide that a full-body
> > MRI is required as a precaution. And that may depend on the size and
> > location of the tumor, as to whether or not it looks like it's been there long
> > enough to have spread. Try not to panic. It's worthwhile asking the dr about
> > it, though.
> >
> > My chordoma was (mostly) removed in Nov 2002 and since then I've had
> > follow-up MRIs twice a year. But during all that time I only had a full body
> > scan twice, even though I still had some tumor remaining. That's because my
> > dr was experienced enough to know my remaining tumor didn't show any
> > characteristics of one that might have spread.
> >
> > Good luck to your boyfriend, and try to remain positive! Informed, but
> > positive!
> >
> > LaDonna
> >
> >
> >
> > In a message dated 3/2/2011 11:45:24 A.M. Central Standard Time,
> > dopyskizer420@ writes:
> >
> >
> >
> >
> > HI,
> >
> > I'm new to this. my boyfriend is 27 and recently got diagnosed with
> > chordoma on the sacrum. he has had pain in his leg off and on since last august
> > and we thought that he might have pulled his hamstring but it might have
> > been this the whole time. i told him that he needs to get a pet scan to make
> > sure nothing has spread but he wont listen. Is there any chance that it
> > could have spread already to other parts of the body? i am so scared and
> > worried and reading things online only makes it worse. is there any advice you
> > can give me or insight on what is going to come.
> >
> > Thanks
> >
> > nicole
> >
>

Reply | Messages in this Topic (64)

#3333 From: "Melanie" <mellimelwithchordoma@...>
Date: Thu Mar 3, 2011 10:24 pm
Subject: good news! mellimelwith...
Send Email

found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years
since pb radiation.....love docs at ucsf , i been having MRI for 4 years now and
i had my first panic attack this time and couldnt finish contrast part of MRI,
doc told me that after this yearly MRI and tests  i am soooo happy ,i was having
a hard time waiting for this 6 month checkup

Reply | Messages in this Topic (4)

#3334 From: shozgirl@...
Date: Thu Mar 3, 2011 5:28 pm
Subject: Re: good news! shoozgirl
Send Email

very good news!! Thanks for letting us know!

Sharon/NYC

**~~**~~**~~**~~**~~**~~**
Together We Will Cure Chordoma.
Visit www.Chordoma.org to invest in a cure

In a message dated 3/3/2011 5:24:33 P.M. Eastern Standard Time, mellimelwithchordoma@... writes:

found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years since pb radiation.....love docs at ucsf , i been having MRI for 4 years now and i had my first panic attack this time and couldnt finish contrast part of MRI, doc told me that after this yearly MRI and tests i am soooo happy ,i was having a hard time waiting for this 6 month checkup

------------------------------------

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Reply | Messages in this Topic (4)

#3335 From: WH6QB - Bill <WH6QB@...>
Date: Thu Mar 3, 2011 10:57 pm
Subject: Re: good news! wmalvey
Send Email

On 3/3/11 2:24 PM, Melanie wrote:

found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years since pb radiation....

Cool. I'm 5.5 years out from surgery and 5 years from radiation (Cyber-Knife). Next MRI is in July.!!

Reply | Messages in this Topic (4)

#3336 From: Oregon Green Thumb <sa2m44@...>
Date: Fri Mar 4, 2011 12:30 am
Subject: Re: Boston here I come sa2m44
Send Email

Good for you!� Best of luck and have a safe flight here.
Steve

On Thu, Mar 3, 2011 at 2:31 AM, Carol Coombs <carolcoombs@...> wrote:

�

Yippee, Boston here I come.
I have received a grant from the Australian government that will allow me to fly to Boston Mass General to have proton beam therapy. This means another chance maybe to rid of this horrible thing. Look out USA here I come 21st March. It's a shame it couldn't be a week earlier and we could have gone to the Chordoma conference.
Carol

Reply | Messages in this Topic (18)

#3337 From: Lisa Vanelli <lmvano@...>
Date: Fri Mar 4, 2011 2:57 am
Subject: bad mri results lmvano
Send Email

My dad just got some awful news today. Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again. There isn't much that can be done at this point. He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back. We are just devastated by this news. He just had another surgery in August so we were hoping that this would have helped him. He's already having trouble with the stairs, etc. I can't believe this is happening again. I am so sad for him that this is happening after all of the treatment that he has endured.

Reply | Messages in this Topic (18)

#3338 From: "uswoods5" <uswoods5@...>
Date: Fri Mar 4, 2011 3:01 am
Subject: Re: bad mri results uswoods5
Send Email

Lisa
What a disappointment for your father and for you. I'm so sorry that things are
so difficult for you both.
Ann

Reply | Messages in this Topic (18)

#3339 From: "Nadine A. " <nadouni74@...>
Date: Fri Mar 4, 2011 3:11 am
Subject: Re: bad mri results naycordova
Send Email

Lisa, I'm so sorry for you, your dad and your family. My thoughts and prayers
are with you all. Just please don't give up hope. I've only been diagnosed 6
months ago, but in these six months I have seen tremendous results with research
on Chordoma. Hopefully they will find a way real soon to, if not cure, but heal
and control Chordoma. Be strong Lisa, for you & your Dad. Much love being sent
your way.

Nadine
Frisco, TX
Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: Lisa Vanelli <lmvano@...>
Date: Fri, 4 Mar 2011 02:57:18
To: <Chordoma_Support_Group@...>
Subject: [Chordoma_Support_Group] bad mri results

�





My dad just got some awful news today.� Despite all of the treatment that he
received since 2006, for his thoracic spinal chordoma, the damned thing is
growing again.� There isn't much that can be done at this point.� He's had
multiple surgeries, all of the radiation that he can safely handle, Gleevec, you
name it and it just keeps coming back.� We are just devastated by this news.� He
just had another surgery in August so we were hoping that this would have helped
him.� He's already having trouble with the stairs, etc.� I can't believe this is
happening again.� I am so�sad for him that this�is happening�after all�of the
treatment that he has endured.�

Reply | Messages in this Topic (18)

#3340 From: Martina21@...
Date: Fri Mar 4, 2011 3:24 am
Subject: Re: bad mri results baurboys3
Send Email

Oh Lisa, I feel for you. I've been a lurker in this group for a while now but they sure came to my rescue in 2007 when my dad went through some horrible surgeries, etc. Your dad's case has some similarities with mine. His diagnosis came in May 2005 days before my youngest son was born. Since then it has been radiation (maxed), a total of six surgeries, and he continues to go for "seedling" removal. The surgeons removed most of his C2-C4 and supported his neck with a titanium cage - that was in December 2007. He has had no chemo. In September of last year he was air-lifted to St. Louis University Hospital (where his surgeon practices) and an emergency tracheotomy was performed. My dad turned 79 in January. He is not half the man he once was. Due to the surgeries, he has lost the use of his right arm (nerve knowingly severed during C2-C4 operation), his stamina is tremendously short but he is totally clear upstairs as they say. We know there is no cure but his suffering has enabled him to see his grandsons and (to me) more importantly, my children now have real memories of him, although they don't know him like I do. We are very fortunate that he has always been a true optimist... but my mother is our resident pessimist. It has all been tremendously difficult on her. She is his primary care nurse, so to speak, and will be 76 this year. It is hard. It is just hard. Lisa, I'll add your dad and your family to our prayers.
Peace, Martina in Missouri

-----Original Message-----
From: Lisa Vanelli <lmvano@...>
To: Chordoma_Support_Group@...
Sent: Thu, Mar 3, 2011 8:57 pm
Subject: [Chordoma_Support_Group] bad mri results

Reply | Messages in this Topic (18)

#3341 From: Oregon Green Thumb <sa2m44@...>
Date: Fri Mar 4, 2011 4:21 am
Subject: Re: bad mri results sa2m44
Send Email

Lisa,
I am very sorry to hear about father's recurrence.� I hope that somehow there's a way they can still help him.� All the best.
Steve

On Thu, Mar 3, 2011 at 6:57 PM, Lisa Vanelli <lmvano@...> wrote:

�

My dad just got some awful news today.� Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again.� There isn't much that can be done at this point.� He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back.� We are just devastated by this news.� He just had another surgery in August so we were hoping that this would have helped him.� He's already having trouble with the stairs, etc.� I can't believe this is happening again.� I am so�sad for him that this�is happening�after all�of the treatment that he has endured.�

Reply | Messages in this Topic (18)

#3342 From: MPatt57@...
Date: Fri Mar 4, 2011 4:28 am
Subject: Re: good news! marypattison60
Send Email

Hi Melanie

I can't tell from the message if it's the MRI that caused your panic attack but I wanted to pass on something I learned. I have always had a hard time with the MRI's. A couple of years ago, a tech gave me a washcloth and told me to put it over my eyes during the MRI and it worked (I don't know how). I still get a pill before the MRI to relax me but for some reason the washcloth trick keeps me from getting claustrophobic (??sspelling). Hope this helps others.

Happy to hear your good news!!!

Love, Mary

-----Original Message-----
From: Melanie <mellimelwithchordoma@...>
To: Chordoma_Support_Group <Chordoma_Support_Group@...>
Sent: Thu, Mar 3, 2011 4:24 pm
Subject: [Chordoma_Support_Group] good news!

found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years since pb radiation.....love docs at ucsf , i been having MRI for 4 years now and i had my first panic attack this time and couldnt finish contrast part of MRI, doc told me that after this yearly MRI and tests i am soooo happy ,i was having a hard time waiting for this 6 month checkup

Reply | Messages in this Topic (4)

#3343 From: MPatt57@...
Date: Fri Mar 4, 2011 4:32 am
Subject: Re: bad mri results marypattison60
Send Email

Hi Lisa

Sorry to hear about your father. I am at a stage where the doctors are trying to get approval for the Gleevec. this thing is like a bad penny - just keeps coming back.

My prayers are with your father and all of your family.

Love, Mary

-----Original Message-----
From: Nadine A. <nadouni74@...>
To: Lisa Vanelli <lmvano@...>; Chordoma_Support_Group <Chordoma_Support_Group@...>
Sent: Thu, Mar 3, 2011 9:11 pm
Subject: Re: [Chordoma_Support_Group] bad mri results

Lisa, I'm so sorry for you, your dad and your family. My thoughts and prayers are with you all. Just please don't give up hope. I've only been diagnosed 6 months ago, but in these six months I have seen tremendous results with research on Chordoma. Hopefully they will find a way real soon to, if not cure, but heal and control Chordoma. Be strong Lisa, for you & your Dad. Much love being sent your way. Nadine
Frisco, TX
Sent from my Verizon Wireless BlackBerry
-----Original Message-----
From: Lisa Vanelli <lmvano@...>
Date: Fri, 4 Mar 2011 02:57:18 To: <Chordoma_Support_Group@...>
Subject: [Chordoma_Support_Group] bad mri results
  My dad just got some awful news today.  Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again.  There isn't much that can be done at this point.  He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back.  We are just devastated by this news.  He just had another surgery in August so we were hoping that this would have helped him.  He's already having trouble with the stairs, etc.  I can't believe this is happening again.  I am so sad for him that this is happening after all of the treatment that he has endured. 
------------------------------------
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Reply | Messages in this Topic (18)

#3344 From: desti625@...
Date: Thu Mar 3, 2011 11:38 pm
Subject: Re: bad mri results ladonna.hoyt
Send Email

Lisa,

My heart goes out to both you and Martina, as you suffer disappointment at the failing health of your fathers. It is true though that the chordoma research has come a long way in recent months. Please don't give up hope, you just never know when there might be a miracle in store for your loved one.

LaDonna

In a message dated 3/3/2011 8:57:23 P.M. Central Standard Time, lmvano@... writes:

My dad just got some awful news today. Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again. There isn't much that can be done at this point. He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back. We are just devastated by this news. He just had another surgery in August so we were hoping that this would have helped him. He's already having trouble with the stairs, etc. I can't believe this is happening again. I am so sad for him that this is happening after all of the treatment that he has endured.

Reply | Messages in this Topic (18)

#3345 From: "Leonor C. Pascual" <nelliepascual45@...>
Date: Fri Mar 4, 2011 7:43 am
Subject: Fw: Fwd: A SMALL REQUEST...PLEASE nelliepascual45
Send Email

----- Forwarded Message ----
From: "boerema8113@..." <boerema8113@...>
To: "Pascual, Leonor" <nelliepascual45@...>
Sent: Thu, March 3, 2011 10:39:56 PM
Subject: Fwd: A SMALL REQUEST...PLEASE

----- Forwarded Message -----
From: "Zeke Dela Cruz" <zekedelacruz@...>
To: "Aida Ansaldo" <missaida_05@...>, "Aimie Sioson" <aimee87@...>, "Alex & Helen Santos" <ahsantos@...>, "Alice Lagman" <alagman03@...>, "Amy Paredes" <jamesparedes2001@...>, "Amy Villacorta" <amyvillacorta@...>, "Anneli De Lara" <anneli.delara@...>, "art divinagracia" <art_divinagraci@...>, "Arthur Jimenez" <ajimenez@...>, "boerema8113" <boerema8113@...>, "Carol & Arnold Buduan" <carolandarnold@...>, "Davis Gray" <davishgray@...>, "Don & Myrna Sison" <adonispsison@...>, "Editha L Valdez" <editha.valdez@...>, "Edna & Frank Teodora" <ednateodoro@...>, "Eyezah Zamora" <eyezah926@...>, "Ferdie & Jean Samanego" <fvsams@...>, "Fred & Josie Guerrero" <fguerre8@...>, "Gerry Sebastian" <gasebastian@...>, "Gel Mortel" <beaniegel@...>, "Greg_Macrina Gutierrez" <macrinapg@...>, "Hernan Bundalian" <hcbundalian@...>, "Ivan & Arleen Siap" <hcdirect@...>, "Jean Samaniego" <jeans814@...>, "Jeffrey & Mary Mystica" <mjeffrey_c@...>, "Jody & Tess Pablo" <virgiliopablo@...>, "Jonathan Hinton" <jonathanhinton@...>, "JOSE V. SISON" <josevsison@...>, "Jose Catequista" <jose_catequista@...>, "Joseph & Mita Delizo" <tepmitadelizo@...>, "Josine Gray" <email@...>, "juanita banes" <juanita.banes@...>, "July & Begith Marquez" <githmarquez@...>, "Katherine Samaniego" <kaysam10@...>, "Larry & Rachel De Guzman" <deguzman@...>, "Lily Beckman" <lilyyb@...>, liwanagfelipe@..., "Lufel Holt" <ubling@...>, "macrinapg" <noreply@...>, "Marivie Alandy" <marivie@...>, "May Turalde" <mayturralde@...>, "Mike Alandy" <cfcmikealandy@...>, "Milan & Jo Ranchero" <milanjocfc@...>, "mildred and rowel" <orivida02@...>, "Mildred Orivida" <orivida707@...>, "Millette Martinez" <mmartinez@...>, "mjdelizo" <mjdelizo@...>, "Nancy Castro" <gjj091211@...>, "Nellie O. Sison" <nellie.sison@...>, "Nilo Salazar" <nsalazar@...>, "Onnie & Rogger Trinidad" <weweonnietutuy@...>, "orencio ancheta" <ranzche@...>, "Pastor_Noah Reyes Panlilio" <pstrnoah@...>, "Pete & Sony Hizon" <josehizon@...>, "peter dadivas" <pidroltd@...>, "Pinky Santos" <pinksantos@...>, "pvrromasanta" <pvrromasanta@...>, "Reggie & Debie Fabian" <rsfabian@...>, "Rene Garcia" <rgarcia@...>, "Renato Tanquilut" <renatotanquilut@...>, "Reno & Aime Sioson cfc" <reno_sioson@...>, "Richard Samaniego" <rsamski@...>, "rodel p garcia" <rodel.p.garcia@...>, rommeldolar@..., "Romy_Vilma Santos" <rvds@...>, "Romy Romasanta" <romeoromasanta@...>, "Rosalina Villaverde" <rosalina.villaverde@...>, sevilla6@..., "Virgil Esteban" <virgilesteban@...>, vpunsa1@...
Sent: Thursday, March 3, 2011 8:14:52 PM
Subject: FW: A SMALL REQUEST...PLEASE

From: OTrini@...
To: JREGALAD@...; eulee@...; pgreen@...; areyes@...; jsalvado@...; Rwinners@...; Eholcomb@...; JLACERNA@...; JLIM@...; JVILLAGR@...; BBudris@...; Eedmond@...; zettesu27@...; milanjocfc@...; jscannel@...; vmikalun@...; hrubin@...; cfcmikealandy@...; zekedelacruz@...; Editha.Valdez@...; hsantos_rlb@...; carolcastelo@...; caring.ramos@...; marcia643@...; maybelle1090@...; panch205@...
CC: rogetri@...; judysnotebook@...; joelanthonydelara@...; jdelara@...; carminajeandelara@...
Date: Thu, 3 Mar 2011 10:45:51 -0600
Subject: FW: A SMALL REQUEST...PLEASE

From: Marita Castro [mailto:Marita.Castro@...]
Sent: Thursday, March 03, 2011 10:36 AM
To: Castro, Marita
Subject: A SMALL REQUEST...PLEASE

Friday is world cancer day - I'd appreciate it if you will forward this request

93% won't forward

A small request.. Just one line.

Dear God, I pray for a cure for cancer. Amen

All you are asked to do is keep this circulating, even if it's only to one more person.
In memory of anyone you know who has been struck down by cancer or is still living with it.

A Candle Loses Nothing by Lighting Another Candle..

Please Keep This Candle Going

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Reply | Messages in this Topic (1)

#3346 From: Jennifer Leibowitz <jennifer_leibowitz@...>
Date: Fri Mar 4, 2011 1:44 pm
Subject: Re: bad mri results jennifer_lei...
Send Email

I am so sorry to hear about your father. Stay strong because he needs someone he could lean on.

--- On Thu, 3/3/11, Oregon Green Thumb <sa2m44@...> wrote:

From: Oregon Green Thumb <sa2m44@...>
Subject: Re: [Chordoma_Support_Group] bad mri results
To: Chordoma_Support_Group@...
Date: Thursday, March 3, 2011, 11:21 PM

Lisa,
I am very sorry to hear about father's recurrence. I hope that somehow there's a way they can still help him. All the best.
Steve

On Thu, Mar 3, 2011 at 6:57 PM, Lisa Vanelli <lmvano@...> wrote:

My dad just got some awful news today. Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again. There isn't much that can be done at this point. He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back. We are just devastated by this news. He just had another surgery in August so we were hoping that this would have helped him. He's already having trouble with the stairs, etc. I can't believe this is happening again. I am so sad for him that this is happening after all of the treatment that he has endured.

Reply | Messages in this Topic (18)

#3347 From: Lisa Vanelli <lmvano@...>
Date: Fri Mar 4, 2011 1:58 pm
Subject: Re: bad mri results lmvano
Send Email

The bad penny reference is a good one...I'll have to tell dad...we have to keep our sense of humor, if nothing else!

Thanks so much for all of your kind words. All of the thoughts and prayers are greatly appreciated.

From: "MPatt57@..." <MPatt57@...>
To: Chordoma_Support_Group@...
Sent: Thu, March 3, 2011 11:32:41 PM
Subject: Re: [Chordoma_Support_Group] bad mri results

Hi Lisa

Sorry to hear about your father. I am at a stage where the doctors are trying to get approval for the Gleevec. this thing is like a bad penny - just keeps coming back.

My prayers are with your father and all of your family.

Love, Mary

Lisa, I'm so sorry for you, your dad and your family. My thoughts and prayers are with you all. Just please don't give up hope. I've only been diagnosed 6 months ago, but in these six months I have seen tremendous results with research on Chordoma. Hopefully they will find a way real soon to, if not cure, but heal and control Chordoma. Be strong Lisa, for you & your Dad. Much love being sent your way. Nadine
Frisco, TX
Sent from my Verizon Wireless BlackBerry
-----Original Message-----
From: Lisa Vanelli <lmvano@...>
Date: Fri, 4 Mar 2011 02:57:18 To: <Chordoma_Support_Group@...>
Subject: [Chordoma_Support_Group] bad mri results
  My dad just got some awful news today.  Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is growing again.  There isn't much that can be done at this point.  He's had multiple surgeries, all of the radiation that he can safely handle, Gleevec, you name it and it just keeps coming back.  We are just devastated by this news.  He just had another surgery in August so we were hoping that this would have helped him.  He's already having trouble with the stairs, etc.  I can't believe this is happening again.  I am so sad for him that this is happening after all of the treatment that he has endured. 
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Reply | Messages in this Topic (18)

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