--- In Chordoma_Support_Group@..., "steve_deshaies"
<steve_deshaies@...> wrote:
>
> Removed the tumor from my sacrum and took out S2 and below. Saved S1 nerves
and half of S2 nerves. Dr. Conrad, from Seattle Cancer Care Alliance, was very
pleased with reuslts. The care here at UW Med. Center has been great. My plan is
to stay in the ortho ward for another week, and then get moved to Rehab for
several weeks. My physical recover is going well, however I have some numbness
in my feet.
>
> Thanks for the group's help and information.
>
> Best,
>
> Steve
>
so glad that the surgery went well and I go to Seattle for my doctor and my
checkups.  I was very impressed with the facility and the care I received.  All
the best for a speedy recovery.  Norma

Chordoma Foundation News posted this July 1,2009.

Encouraging results of drug experiment in Italy.

Link to foundation
annoucementhttp://www.chordomafoundation.org/news/view.aspx?id=72

Link to publication abstract
http://annonc.oxfordjournals.org/cgi/content/abstract/mdp210v1

May provide help for some of us with recurring tumors.

Best Regards, Bill.

I was diagnosed with a Chordoma at T3 - T4 in April of this year.
But first let me back up a bit.  In Sept. of 2008 I was diagnosed
with Non-Hodgkin's Large B-cell Lymphoma.  There were two masses.
One in the hip and one at the spine between the shoulder blades.  To
make a long story short, after chemo for the Lymphoma, the mass on
the spine between my shoulders was still there.  After two CT-guided
biopsies, it was diagnosed as a Chordoma.

There seems to be a difference of opinion on the best way to treat
these things.  Some doctors are saying to take radiation first, then
surgery to remove the tumor, then more radiation after recovery.
Others are saying to have the surgery to remove the tumor first and
do all the radiation together.  They say that you do not want to
radiate the tumor then give it a break before finishing the radiation.

I have appointments at Johns Hopkins in Baltimore next week and more
at Mass General the following week.


Which of the two treatment plans is best?  It seems like the more I
research this disease, the more confused I get.

--- In Chordoma_Support_Group@..., "Mark" <mpayne6@...> wrote:
>
> I was diagnosed with a Chordoma at T3 - T4 in April of this year.
> But first let me back up a bit.  In Sept. of 2008 I was diagnosed
> with Non-Hodgkin's Large B-cell Lymphoma.  There were two masses.
> One in the hip and one at the spine between the shoulder blades.  To
> make a long story short, after chemo for the Lymphoma, the mass on
> the spine between my shoulders was still there.  After two CT-guided
> biopsies, it was diagnosed as a Chordoma.
>
> There seems to be a difference of opinion on the best way to treat
> these things.  Some doctors are saying to take radiation first, then
> surgery to remove the tumor, then more radiation after recovery.
> Others are saying to have the surgery to remove the tumor first and
> do all the radiation together.  They say that you do not want to
> radiate the tumor then give it a break before finishing the radiation.
>
> I have appointments at Johns Hopkins in Baltimore next week and more
> at Mass General the following week.
>
>
> Which of the two treatment plans is best?  It seems like the more I
> research this disease, the more confused I get.
>
To Mark
  My doctors in Italy told me always need surgery for chordoma and after
radiations, always, cause radiation in tumor alter the tumor and after the
surgery is more difficult...best wishes..Franco

Hello, I was just diagnosed with sacral chordoma at the Mayo Clinic in Jacksonville. I am researching the best hospital to have my surgery. I would appreciate any input on which hospital you used and your thoughts on your experience. Thanks so much. Susan Garbett

Thanks for responding so quickly. If you wouldn't mind giving me a summary of your experience at Mayo in Rochester. I am considering going there. Susan --- On Sun, 7/5/09, Austin Moore <amoore5535@yahoo.com> wrote: From: Austin Moore <amoore5535@yahoo.com> Subject: Re: [Chordoma_Support_Group] (unknown) To: Chordoma_Support_Group@yahoogroups.ca Date: Sunday, July 5, 2009, 3:16 PM Susan: You can email me at amoore5535@yahoo. com if you want to hear my experience with a large sacral chordoma   Austin From: Susan Garbett <susanlgarbett@ yahoo.com> To: Chordoma_Support_ Group@yahoogroup s.ca Sent: Sunday, July 5, 2009 12:25:18 PM Subject: [Chordoma_Support_ Group] (unknown) Hello, I was just diagnosed with sacral chordoma at the Mayo Clinic in Jacksonville. I am researching the best hospital to have my surgery. I would appreciate any input on which hospital you used and your thoughts on your experience. Thanks so much. Susan Garbett

I was diagnosed with a Chordoma at T3 - T4 in April of this year.
But first let me back up a bit. In Sept. of 2008 I was diagnosed
with Non-Hodgkin's Large B-cell Lymphoma. There were two masses.
One in the hip and one at the spine between the shoulder blades. To
make a long story short, after chemo for the Lymphoma, the mass on
the spine between my shoulders was still there. After two CT-guided
biopsies, it was diagnosed as a Chordoma.

There seems to be a difference of opinion on the best way to treat
these things. Some doctors are saying to take radiation first, then
surgery to remove the tumor, then more radiation after recovery.
Others are saying to have the surgery to remove the tumor first and
do all the radiation together. They say that you do not want to
radiate the tumor then give it a break before finishing the radiation.

I have appointments at Johns Hopkins in Baltimore next week and more
at Mass General the following week.

Which of the two treatment plans is best? It seems like the more I
research this disease, the more confused I get.

Does anyone know what type of tumor designer, Tara Subkoff, has?  It is reported
she will have brain surgery in 2 months, that her tumor is benign, and that she
faces a lengthy recovery. She is 36.  The report says that if she did not have
surgery, her life expectancy would be 2 years.  I cannot help but be curious.

--- In Chordoma_Support_Group@..., "Fae Wilhelm" <dansfae@...> wrote:
>
> Does anyone know what type of tumor designer, Tara Subkoff, has?  It is
reported she will have brain surgery in 2 months, that her tumor is benign, and
that she faces a lengthy recovery. She is 36.  The report says that if she did
not have surgery, her life expectancy would be 2 years.  I cannot help but be
curious.
>

The article I read said sh has a acoustic neuroma.

Here is a link to what it is:

http://www.anausa.org/what_is_an.html

--- In Chordoma_Support_Group@..., "Mark" <mpayne6@...> wrote:
>
> --- In Chordoma_Support_Group@..., "Fae Wilhelm" <dansfae@> wrote:
> >
> > Does anyone know what type of tumor designer, Tara Subkoff, has?  It is
reported she will have brain surgery in 2 months, that her tumor is benign, and
that she faces a lengthy recovery. She is 36.  The report says that if she did
not have surgery, her life expectancy would be 2 years.  I cannot help but be
curious.
> >
>
> The article I read said sh has a acoustic neuroma.
>
> Here is a link to what it is:
>
> http://www.anausa.org/what_is_an.html
>
Thank you.  I have a friend with this type of tumor.  She had surgery in 1994,
one year before me with clival chordoma.  She now sells health insurance.

Chordoma Support Group Newsletter July 2009

Where are we?!?

The Group has settled for the time being. I'm sorry it has taken so long. I wanted to find an inexpensive solution so that the site is not a liability to to future webmasters.

You can find our home page at www.chordomasupport.org, together with a set of information pages.

You can find the message board at  http://ca.groups.yahoo.com/group/Chordoma_Support_Group/

For new members: I am the webmaster, Ann. I am Canadian and had treatment for clival chordoma in 2002. You can contact me at chordomamanagers@...

Our information pages are being hosted by a church in a small Canadian town, as part of their community outreach. Thanks, St Aidan's!

The message board is hosted by Yahoo! Canada. Thanks, Yahoo! Canada.

Archives

I saved all the documents from the previous site and one day I will organise them and publish them on our site. That will be about three thousand documents to sort and reformat, so don't hold your breath - sorry.

Keeping in touch

You can change the email you use to receive messages from this site by clicking on "Edit Membership" just above the group name on the front page of the message board.

We lost some members through "bad" email addresses when we moved the Group. Please keep your email up to date. You still need your yahoo email to sign into the group.

Logo

We have a temporary logo on the message board. It's a start. I'd be delighted to have suggestions, designs or comments. You can contact me at chordomamanagers@...

Question

Would you like to stay with one message board or have separate ones for different interests as we had before? If we set up more boards I will need volunteers to "mind" them.

We already have group volunteers but we can always use more. You can contact me at chordomamanagers@...

Have you applied to join this group recently? Please check your Yahoo email inbox.

More information? - visit www.chordomasupport.org

Feedback?? Wonderful - keep it coming!

Have a nice summer,
Ann
chordomamanagers@...  

Steve:

So glad to know you're recovering. As you know, complications can be common with
our type of operation. I too suffered several major ones during my surgical
journey for my large sacral tumor. However, the body and mind have an incredible
ability to mend, heal and adapt. 

Left foot and leg numbness are extremely common among us sacral patients. There
are medications (non narcotic) that can help that (nerve issues). I had my
entire sacrum removed with the exception of a small horizontal top band...almost
a full amputation. However, I can walk and have a decent quality of life. I have
some tips and ideas that can make sitting for long periods of time enjoyable (up
to six hours at a sit...lol) and other tips as well. 

I can lend you some suggestions and pointers, especially if you'll now be
required to self cath. I've devised a method that will help significantly cut
down the rate of possible UTIs. Even my Pcp and urologist at Hopkins were
impressed and are going to recommend the method to other self cathing patients.
There are other things too that rehab, even at the best hospitals, don't
understand, know or prepare you for for that many of us here can help assist you
with. 

Please feel free to contact me if you have any questions about "anything"...like
many here, "been there, done that"...lol

Skype: shaneknee
Google Talk: shaneknee
AIM: FanOfJohann
Cell: (anytime and best phone to reach me @) 301.370.8165

Peace and God's Blessings, 
Shaner 


Sent from iPhone...


--- In Chordoma_Support_Group@..., Steve Deshaies
<steve_deshaies@...> wrote:
>
> Hi all,
>
> Three weeks post surgery and I have moved to the in-patient rehab center here
at UW Med. Center.
>
> I had some set backs dealing with blood infections after surgery. That knocked
me for a loop as I was experiencing chills and sweats. The infection has cleared
and I'm feeling much better.
>
> I've been walking with the help of a walker. My feet have a lot of numbness.
My left foot is weaker. Not sure how much of this will be permanent or will
eventually improve. Still working on bowel and bladder issues. Now that I'm in
rehab I'll be focusing on appropriate theraphy. I should be in rehab for 2-3
weeks and will then go home.
>
> Thanks for your kind comments and support,
>
> Best,
>
> Steve Deshaies
>
>
>
>
> ________________________________
> From: Austin Moore <amoore5535@...>
> To: Chordoma_Support_Group@...
> Sent: Thursday, July 2, 2009 9:15:15 AM
> Subject: Re: [Chordoma_Support_Group] Re: surgery went well
>
>
>
>
>
> Steve: Sounds like your in great shape for loosing S2. I do not think that the
numbness will bother you much. If you do not have a "drop foot" and
only numbness you will walk just fine. I would like to hear of your prognosis
and if I can be of help, let me know.
>
> Austin 
>
>
>
>
> ________________________________
> From: najones11 <najones11@gmail. com>
> To: Chordoma_Support_ Group@yahoogroup s.ca
> Sent: Wednesday, July 1, 2009 8:57:09 AM
> Subject: [Chordoma_Support_ Group] Re: surgery went well
>
>
> --- In Chordoma_Support_ Group@yahoogroup s.ca, "steve_deshaies"
<steve_deshaies@ ...> wrote:
> >
> > Removed the tumor from my sacrum and took out S2 and below. Saved S1 nerves
and half of S2 nerves. Dr. Conrad, from Seattle Cancer Care Alliance, was very
pleased with reuslts. The care here at UW Med. Center has been great. My plan is
to stay in the ortho ward for another week, and then get moved to Rehab for
several weeks. My physical recover is going well, however I have some numbness
in my feet.
> >
> > Thanks for the group's help and information.
> >
> > Best,
> >
> > Steve
> >
> so glad that the surgery went well and I go to Seattle for my doctor and my
checkups. I was very impressed with the facility and the care I received. All
the best for a speedy recovery. Norma
>
>
>
>
>
>
>       __________________________________________________________________
> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot
with the All-new Yahoo! Mail.  Click on Options in Mail and switch to New Mail
today or register for free at http://mail.yahoo.ca
>

Does anyone know anything about carbon ion radiotherapy?  It seems to be the
treatment of choice for sacral chordoma at this one hospital in Japan.  I was
just wondering if anyone had had any experience or familiarity with it?

Thanks,
Ed

I heard that there are only two places in the world that have this, Japan and
Germany.  I also heard that it is really the only radiation that will actually
destroy Chordoma tumors.

--- In Chordoma_Support_Group@..., "Ed" <metrojunky@...> wrote:
>
> Does anyone know anything about carbon ion radiotherapy?  It seems to be the
treatment of choice for sacral chordoma at this one hospital in Japan.  I was
just wondering if anyone had had any experience or familiarity with it?
>
> Thanks,
> Ed
>

I'll be heading for the deep Canadian woods for a week or two starting this
Saturday. A tiny cabin with waterfront, deer, trails and silence.

No cable, no tv and no internet - going cold turkey on that one!

Applications for membership, problems and complaints to
chordomamanagers@..., as usual please. Someone will deal with them. I
won't be monitoring my uswoods.... account at all.

Got my mosquito repellant, bear bells and bikini. Last time we camped up that
way, we heard the local wolf pack howling - gulp!

All the best
Ann

You can reach me before Friday if there is anything urgent.

----- Original Message -----

From: uswoods5

To: Chordoma_Support_Group@...

Sent: Monday, July 13, 2009 11:05 AM

Subject: [Chordoma_Support_Group] Heading for the deep woods

I'll be heading for the deep Canadian woods for a week or two starting this Saturday. A tiny cabin with waterfront, deer, trails and silence.

No cable, no tv and no internet - going cold turkey on that one!

Applications for membership, problems and complaints to chordomamanagers@gmail.com, as usual please. Someone will deal with them. I won't be monitoring my uswoods.... account at all.

Got my mosquito repellant, bear bells and bikini. Last time we camped up that way, we heard the local wolf pack howling - gulp!

All the best
Ann

You can reach me before Friday if there is anything urgent.