I have arrived in Boston and have just finished my third proton radiation treatment. I managed to get a room at a VA temporary lodging facility at Jamaica...
6580
Dennis Kelley
capndenny787
Aug 1, 2012 5:42 pm
Hello Robert, My son Kevin and I will be there tomorrow just for the day, for the initial visit with the doctors at MGH. Â We leave St. Louis at 6 am and get...
6581
shozgirl@...
shoozgirl
Aug 1, 2012 5:47 pm
Good luck Dennis! Please keep us posted, am so glad you are both going. Sharon/NYC **~~**~~**~~**~~**~~**~~** Together We Will Cure Chordoma. Visit...
6582
shozgirl@...
shoozgirl
Aug 1, 2012 8:06 pm
I hope your treatments go well. Paul at the front desk has some Chordoma Survivor pins if you would like one, just ask! Sharon/NYC **~~**~~**~~**~~**~~**~~** ...
6583
Austin Moore
amoore5535
Aug 1, 2012 9:48 pm
Had a sacral resections in January 2000.......I have about twenty tumors in my lungs I am asymptomatic. IÂ play golf 4 times a week and travel. I can use a...
6584
Austin Moore
amoore5535
Aug 1, 2012 10:00 pm
I have been out of the country for a while and have not been able to read my Chordoma email.... I had the resection in january 2000 at the Mayo Clinic. They...
6585
Katie M
katemi_99
Aug 2, 2012 2:37 pm
Pam- We ended up meeting with Drs. McKean (otolaryngologist, plastic surgeon, and skull base specialist)Â and Sullivan (neurosurgeon) at U of M; we feel very...
6586
Pam
proudamerica...
Aug 2, 2012 3:34 pm
glad you found a team you are happy with. Wishing you all the best Pam ... From: Katie M To: Chordoma_Support_Group@... Sent: Thursday, August 02,...
6587
uswoods5
Aug 2, 2012 3:35 pm
I'm coming quite late to this thread. I was writing my ten year thank you cards to my doctors last week. I send cards every five years. I had trans-nasal...
6588
Anne Vigil
acvigil...
Aug 2, 2012 11:45 pm
Kevin and Robert, Good Luck in Boston. I was treated very well there. Anne/St. Louis On 8/2/2012 5:06 AM, Chordoma_Support_Group@... wrote: Chordoma...
6589
charles stephenson
cstephenson77
Aug 3, 2012 1:38 pm
good luck...please visit Legal Seafood Co down by the aquarium, its  great. The subway system was o.k. when I was there,except the silver line...the buss kept...
6590
capndenny787
Aug 3, 2012 5:39 pm
OK, we met with 5 doctors at MGH on Thursday. Dr. Hornicek said that the tumor WAS operable, and he saw no reason to sacrifice the leg. He said that there...
6591
Kiser,Ryan Mikel Burd...
ryanmbk10
Aug 3, 2012 5:50 pm
awesome news, I loved boston and MGH - #1 hospital in America, (via US News)! Glad you guys finally got some positive news, feeling well and reassured about...
6592
Sharon Berlan
shoozgirl
Aug 3, 2012 6:25 pm
This is very very good news. I am so glad you were able to make this trip. A prime example of the issues we face getting the new treatment. Multiple opinions!...
6593
uswoods5
Aug 3, 2012 8:13 pm
Glad to hear it is going well. Don't forget to visit the Cancer Centre who have tickets for everything from museums to sports events for free. All the best...
6594
uswoods5
Aug 3, 2012 8:16 pm
Thank you for your kind words for us all. I'm not at all surprised that you had a good experience with MGH. They have helped to give me 10 years and counting. ...
6595
najones11@...
najones11
Aug 3, 2012 10:29 pm
Hooray Dennis and thank goodness for patience and guidance. Now you have a plan, the hard part is over. Trust your doctors and proceed with faith and hope....
6596
uswoods5
Aug 3, 2012 11:32 pm
What a day! Have you made your mind up for San Francisco? Please keep us up to date, and all the best with it. I wonder if there is a Hope Lodge or somewhere...
6597
RODNEY LAYTON
chairmech
Aug 3, 2012 11:51 pm
I am still working out things. I do plan to go there. I work for an airline so ticket are no problem that's a good thing. To:...
6598
Kate
katemi_99
Aug 3, 2012 11:52 pm
Alright everyone; here's the latest opinion we've gotten. Dr. Curry's office (from Mass Gen) called Sam today and said Dr. Curry is not so sure this is a...
6599
dansfae@...
dansfae
Aug 4, 2012 12:00 am
Wow In a message dated 8/3/2012 7:52:15 P.M. Eastern Daylight Time, katemi_99@... writes: Alright everyone; here's the latest opinion we've gotten. Dr....
6600
Sharon Berlan
shoozgirl
Aug 4, 2012 2:22 am
That is great news, please keep us posted! Sharon /NYC Sent from my iPad...
6601
nadouni74@...
naycordova
Aug 4, 2012 2:59 am
I was told the same thing about my tumor. The doctor said its nothing let's keep an eye on it. But I pushed him to do a biopsy (which was not a good thing to...
6602
bcisquette
Aug 4, 2012 5:07 am
What great news.. I am very glad to hear there is help with trvel expense. If my tumor recurs, I will be checking into this. I am super excited for kevin. He...
6603
Tom Butcher
tombutcher23
Aug 4, 2012 2:05 pm
I am so glad that Kevin and you had the patience and the ability to actually attend another avenue to get a different positive choice. I deeply feel that you...
6604
Tom Butcher
tombutcher23
Aug 5, 2012 1:22 am
Sorry my phone sent before I was finished. Back to more doctors, more hospitals need to cross research what each other do to get the best results. I admit my...
6605
Rick Gehl
rickgehl...
Aug 5, 2012 5:05 pm
Hey everyone, A couple weeks ago I wrote in about experiencing a lot of dreams and my head was feeling funny. Well last week I could barely get out of bed, my...
6606
bcisquette
Aug 5, 2012 6:05 pm
Has anyone had these symptoms when their tumor was in the neck? Those of us with chordoma in the cervical spine are rare apparently, and its hard to find any...
6607
uswoods5
Aug 5, 2012 9:48 pm
I usually found a good reaction to my concerns when I called my doctors. That's where having chordoma helps(!) - people remember you. Last time I hit an ER in...
6608
bcisquette
Aug 5, 2012 10:47 pm
Thank you Ann. I guess I don't want to be a pest. I am afraid out here few drs will even know what it is. Lol I really am bad about not seeking medical help. I...
