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chordoma

charb
Posts: 1
Joined: Apr 2002

is there anybody out there who has been diagnosed with a chordoma(cancer of the tailbone)

mrsbe
Posts: 58
Joined: Jun 2001

Hi there Charb,
Take a look at the posting below yours on the other chordoma posting . If you have any questions please feel free to email me.
I wish you wellness
MrsBe

RockinRobin
Posts: 4
Joined: Sep 2004

I had a sacral chordoma on S-4 and S-5, char. All my treatments were at Mass. General Hospital in Boston. I live in Akron, Ohio. I had surgery to remove tailbone and tumor on 12/14/04 and 2 rounds of radiation, one before and one after surgery, 39 treatments in all. I had 22 photon beam and 17 proton beam radiation treatments. I stayed with friends in Watertown for up to 2 months at one point. I might have already sent you a message; didn't know if that was the same person or not. This is such a rare cancer that there are not many of us around. Thanks in advance for your reply. Would appreciate corresponding with you. Robin Zoesch (RockinRobin in the cancer chat room)

germana
Posts: 1
Joined: Sep 2009

Dear RockingRobin an all,

my step-brother, who is 32 y.o., wasd diagnosed with sacral chordoma in New York City. I´d like to know where can he get the best treatment and if the photon beam radiation treatment is the more effective on available and where can he get it (I´ve heard that at Mass. General Hospital they have a protocol to deal with this rare type of cancer.

Best regards, Germana.

RockinRobin
Posts: 4
Joined: Sep 2004

I went to Mass. General Hospital because they have a protocol treatment plan for this rare cancer. While there, I was the 43rd person then being treated for a chordoma. It's not the only place that works on chordoma cases, of course, but I chose it based on reading medical journal articles that are read by doctors. The name Mass. General appeared in these articles over and over. I completed my last radiation treatment on 3/17/05, but I would assume they are still one of the best hospitals around dealing with chordomas. I had both photon beam and proton beam radiation, some before surgery and some after surgery. Much luck to your step-brother. He can e-mail me at: rzoesch@verizon.net if he needs some support from a fellow survivor. (He is a survivor from the moment of his diagnosis!) - Robin

effigez
Posts: 1
Joined: Nov 2013

Dear Robin,

My dad was recently diagnosed with Chordoma from S3 and below.

As you man timed there are very few cases of this type of cancer and we are feeling overwhelmed and helpless in many ways. I would love to talk with you and hear about your experience and get from you as much information as possible. 

 

My dad lives over sea and we are considering to bring him over here.

 

My cell phone is 917.455.7194 and I would be so appreciative if you would curve me 5 minuted of your time to discusse this in person.

 

Thanks in advance,

 

Effi

uswoods5
Posts: 2
Joined: Sep 2010

There is an excellent chordoma resource at the Massachussetts General Hospital in Boston. I was treated there in 2002.

 

http://www2.massgeneral.org/chordoma/harriscenter.htm

 

They will consult by mail if need be,call the International coordinator at http://www.massgeneral.org/international/default.aspx

regards

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