Thanks so much for resending, Ann. It's good to hear the results of the survey! Judy ________________________________________ From:...
805
Paulo M. de Lima Filho
plimaf@...
Jan 6, 2010 5:05 pm
Please help me !!!! Paulo Martins de Lima Filho From south of Brazil ..... Jacksonville ??? Beam of Protons !!!! Thanks very much !!!! Fone call ??? On Dom...
806
uswoods5
Jan 6, 2010 6:37 pm
I have spoken to the people at The University of Florida Proton Therapy Institute as you asked. They said that if you complete the contact form at ...
807
Paulo M. de Lima Filho
plimaf@...
Jan 7, 2010 4:00 am
Please, I am dying, I need your help quicly. I have chordoma. I heard about a Hospital in Jaksonville and a beam of protons. How can I get there? Give me the...
808
Oregon Green Thumb
sa2m44
Jan 7, 2010 4:45 am
Paulo, Ann sent you a website to go to. She suggested that you complete their form and send it. You could also try to communicate directly with the people in...
809
uswoods5
Jan 8, 2010 1:49 am
As most of you know, we have an outpost on Facebook at: http://www.facebook.com/?ref=home#/group.php?gid=133850807583 ...
810
Teana
goodie4wolf
Jan 9, 2010 10:06 pm
Today is January 9, 2010 I brought my oldest daughter (17 years old)out to the NCI in Bethesda for some research while here they decide to do a head MRI....
811
desti625@...
ladonna.hoyt
Jan 10, 2010 9:31 am
There are at least 4 locations in the US for proton beam radiation: Mass. General in Boston, Loma Linda Hospital in California, Arthur Anderson Hospital in...
812
klmonto121
Jan 10, 2010 6:25 pm
Hi all - husband was just diagnosed with Chondroid Chordoma - tumor is large and has grown into his nasal cavity and soft palate. Just in inital stages of...
813
tinasfunstuff tds.net
tinasfunstuff
Jan 10, 2010 9:01 pm
Mass. General Hospital in Boston with Dr. Norbert Liebsch at the healm of the chordoma team and proton beam radiation therapy. 3 years ago I had clival...
814
desti625@...
ladonna.hoyt
Jan 10, 2010 9:15 pm
Kristi, You can contact the National Cancer Institute (part of the National Institute of Health) regarding the familial chordoma studies, however there are ...
815
Sheila
luvs2dance56
Jan 10, 2010 10:20 pm
I understand that there is always good and bad days with this devil, but my friend is back in the local hospital and although I'm not sure exactly what's going...
816
Teana Hansen
goodie4wolf
Jan 11, 2010 3:12 am
I am one of the families I and my 2 youngest daughters had Chordomas my oldest is having a genetic test ran to see if she has the gene. They did MRI's did not...
817
Teana Hansen
goodie4wolf
Jan 11, 2010 3:16 am
Yes have your kids tested they told me when they found mine I had nothing to worry about it was not genetic but it is I have had it and my two babies also....
818
desti625@...
ladonna.hoyt
Jan 11, 2010 3:28 am
Oh I think I remember your posting a long time ago that you and your two daughters were all afflicted with chordomas. I'm sorry your third daughter has cysts,...
819
uswoods5
Jan 11, 2010 10:07 pm
http://dceg.cancer.gov/geb/research/activeclinical/chordoma <http://dceg.cancer.gov/geb/research/activeclinical/chordoma> Since 1958, only 6 families with...
820
Bill Victor
vbill35
Jan 12, 2010 4:16 am
This is the link to the website for the Midwest Proton Radiotherapy Institute which is located In Bloomington, Indiana on the Indiana University campus. Â ...
821
alhamorif
Jan 14, 2010 10:56 am
Hello all ,, just wanted to introduce my self again , my name is saad alhammouri your friend from Jordan. i was diagnosed with the clivus chordoma in sept 2008...
822
Gail Berger
gbberger...
Jan 15, 2010 4:54 pm
Sorry it has taken me so long to get back to you. Thank you for the info on Hope Lodge. We got confirmation this week that we can stay there. We will be...
823
Melanie
mellimelwith...
Jan 16, 2010 6:08 pm
i satayed at the hope lodge in worcester 2008,right before the one in boston! BEST WISHES however the week u are hving just tests take avantage of the free...
824
shepherdcandice
Jan 17, 2010 6:25 pm
Yesterday I celebrated 9 years post clival chordoma diagnosis. I had three brain surgeries and 40 radiation treatments at Mass General and so far no...
825
Sharon Diebel
diebelsharon
Jan 17, 2010 6:43 pm
Congratulations – did you have regular radiation or proton – I had regular and I get bombarded every time I mention it as it is all wrong but proton in not...
826
uswoods5
Jan 18, 2010 1:16 am
Thank you so much. I wish more people would introduce themselves [again] like this. Glad to hear you are doing well. Ann...
827
fae
dansfae
Jan 18, 2010 1:27 am
Cheers. Keep up the good work....
828
Sharon Diebel
diebelsharon
Jan 18, 2010 1:38 am
This guy is teriffic and if any of you are in the Phoenix area he is definitely worth seeing. All they need is your RSVP. This is another brain tumor support...
829
M Payne
mpayne6
Jan 18, 2010 8:31 am
The best place for Chordoma treatment is Mass. General Hospital. I had a Chordoma on T4 and it was treated there. Go to their web site. Skull base tumor...
830
charles stephenson
cstephenson77
Jan 18, 2010 2:28 pm
Congratulations: I have 8 years since diagnosis. operation in 02, 43 proton treatments in 04. fine since, I went to Boston ( a very good experience) now...
831
desti625@...
ladonna.hoyt
Jan 18, 2010 8:06 pm
Good for you both, Candice and Charlie! Later this year I will also be 8 years post-op without recurrence! 7 years ago at this time I was receiving proton...
832
Michael Wisherop
michael_wish...
Jan 18, 2010 8:39 pm
I second the Loma Linda/Dr. Laredo shout out. I stayed with a friend in Corona, but there was a tight knit group of patients who did a lot together; trips,...
833
Carter, Judith
judithcarter100
Jan 18, 2010 8:45 pm
Count me in on the shout out as well. I had proton beam radiation for a cervical chordoma there a little over 6 years ago (as well as concurrent radiation for...
