Great News Steve! Congratulations and please keep us posted. Sharon/NYC In a message dated 6/30/2009 11:29:42 P.M. Eastern Daylight Time, ...
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najones11
Jul 1, 2009 1:58 pm
... 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...
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Austin Moore
amoore5535
Jul 2, 2009 4:16 pm
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...
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vbill35
Jul 3, 2009 2:49 pm
Chordoma Foundation News posted this July 1,2009. Encouraging results of drug experiment in Italy. Link to foundation...
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shozgirl@...
shoozgirl
Jul 3, 2009 3:00 pm
thank you for the post, this is good information! In a message dated 7/3/2009 10:54:46 A.M. Eastern Daylight Time, vbill35@... writes: Chordoma...
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Mark
mpayne6
Jul 5, 2009 3:39 am
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...
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antares_39
Jul 5, 2009 6:26 am
... 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...
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shozgirl@...
shoozgirl
Jul 5, 2009 2:01 pm
Hello: There are varied options these days as things seem to be changing with technology and the learning curve on Chordoma. Feel free to contact me off line...
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Susan Garbett
susanlgarbett
Jul 5, 2009 5:25 pm
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...
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Austin Moore
amoore5535
Jul 5, 2009 7:14 pm
I had a sacral Chordoma and it was resected at the Mayo Clinic in Rocherter, Minn. They probably saved my life. I lost S2 thru 5 and my tailbone. I am...
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Austin Moore
amoore5535
Jul 5, 2009 7:16 pm
Susan: You can email me at amoore5535@... if you want to hear my experience with a large sacral chordoma Austin ________________________________ From:...
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Shane A. Knee
shaneknee
Jul 5, 2009 7:49 pm
Dear Susan: I was diagnosed with a sacral sarcoma in August of '07. After much research on the Internet, it seemed as if every medical paper written was either...
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Susan Garbett
susanlgarbett
Jul 5, 2009 9:33 pm
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 ... ...
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Shane A. Knee
shaneknee
Jul 6, 2009 11:14 am
Susan continued: I'm sorry, I'm typing from my iPhone and not doing a very good job of it. I was going to close by saying only a handful of Dr should be...
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Shane A. Knee
shaneknee
Jul 6, 2009 11:16 am
Dear Mark: You will be in the world's top hands both at Johns Hopkins and Mass General. Peace and God's blessings.... Shane...
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Fae Wilhelm
dansfae
Jul 7, 2009 11:45 am
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...
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Mark
mpayne6
Jul 7, 2009 12:37 pm
... 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...
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Fae Wilhelm
dansfae
Jul 7, 2009 12:49 pm
... 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....
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uswoods5
Jul 10, 2009 4:56 pm
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...
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Steve Deshaies
steve_deshaies
Jul 11, 2009 2:19 am
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...
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shozgirl@...
shoozgirl
Jul 11, 2009 7:56 am
Steve: it sounds like a rough road but you are on it, moving and progressing...thank you for keeping us posted and we are sending positive energy your way....
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Daniela Bartoli
fracami39
Jul 11, 2009 12:41 pm
Thank you Ann, nice summer also to you and to other members of chordoma group Francesco and Daniela Benzi, Italy ________________________________ Da: uswoods5...
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Austin Moore
amoore5535
Jul 11, 2009 2:24 pm
I would like to know UW Med. Center.....UWescon. UWash??? Also..how much of your sacrum did they resect???? Amoore...eamil: amoore5535@... ...
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shaneknee
Jul 11, 2009 3:57 pm
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...
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norma jones
najones11
Jul 11, 2009 3:57 pm
I believe we all know a little about set backs and congratulate you on your positive attitude on advancing forward. It is a day by day progress, but you will...
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Ed
metrojunky
Jul 12, 2009 7:05 pm
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...
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Mark
mpayne6
Jul 13, 2009 1:03 am
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...
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Austin Moore
amoore5535
Jul 13, 2009 11:52 am
Steve: I am a male and have be self cathing for 9 years. I have not had a UTI for many years and I have no trouble with my bowel. If you would like to talk you...
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uswoods5
Jul 13, 2009 3:07 pm
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...
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Tina Rosen
tinasfunstuff
Jul 13, 2009 3:43 pm
Have a peaceful getaway Ann. Fondly, Tina ... From: uswoods5 To: Chordoma_Support_Group@... Sent: Monday, July 13, 2009 11:05 AM Subject:...
