have a great time Pam ... From: uswoods5 To: Chordoma_Support_Group@... Sent: Monday, July 13, 2009 11:05 AM Subject: [Chordoma_Support_Group]...
258
najones11
Jul 13, 2009 10:00 pm
... Sounds loverly to me..as thoreau, to enjoy the peace and quiet and get away from the real beasts...people! refresh your batteries and look forward to a...
259
Mark
mpayne6
Jul 14, 2009 1:53 am
After visiting the guys at Mass General Hospital I have decided to let them do the treatment and surgery of my Chordoma on T4. They tell me that radiating the...
260
Carter, Judith
judithcarter100
Jul 14, 2009 2:07 am
Actually, I think that there really is no "right" decision. Everyone is different in terms of their tumor and its characteristics and in terms of you and your...
261
desti625@...
ladonna.hoyt
Jul 14, 2009 3:25 am
The research that we (patients) do is limited so at some point we have to rely on the professionals to give us the right advice. The advice you received from...
262
najones11
Jul 14, 2009 12:38 pm
263
Austin Moore
amoore5535
Jul 14, 2009 7:08 pm
Don't get "eaten" AWMoore ________________________________ From: uswoods5 <uswoods5@...> To: Chordoma_Support_Group@... Sent: Monday, July 13,...
264
mellimelwithchordoma
mellimelwith...
Jul 14, 2009 11:53 pm
it has been a year since my proton at mass general say hi for me!! melanie...
265
chordomaboy
Jul 21, 2009 6:33 am
Carbon Ion Therapy has been available in Germany for years thru a center in Darmstadt. In 2008/2009, a newer and more advanced center was opened in Heidelberg,...
266
desti625@...
ladonna.hoyt
Jul 21, 2009 6:48 am
Hello "Chordoma Boy", That is interesting information about the HIT treatments. Are there any stats yet about how successful it's been? What are the side...
267
chordomaboy
Jul 23, 2009 5:46 am
LaDonna- I'm not sure anyone is in a position to compare Proton and Carbon one to one. As you know, with both the low number of patients and the huge ...
268
uswoods5
Jul 25, 2009 11:29 pm
Posted for Tina: Great News! On Monday, 7/20/09, my MRI had no changes since last year! That means all is swell, as I move forward with hope knowing I'm fine...
269
Rodney
chairmech
Jul 26, 2009 1:03 pm
... That's good news. Hope mine is good is September....
270
Tina Rosen
tinasfunstuff
Jul 26, 2009 1:16 pm
Good morning Rodney, Of course it will be good news. That's the only way to think and as my 30 year old son said to me.....so simply: "you're fine now, so...
271
uswoods5
Jul 26, 2009 3:31 pm
Mike's wife Suellen has written to tell us of Mike's sudden passing on June 16th 2009. He leaves his wife and two children. Suellen also wrote: ......... I...
272
eric .
goldteam19
Jul 26, 2009 4:42 pm
Hello all, my name is Eric i am 36 years old and i am from france (sorry for my english...), i have a sacrum chordoma . we discovered this illness on march...
273
najones11
Jul 26, 2009 5:10 pm
274
najones11
Jul 26, 2009 5:14 pm
275
najones11
Jul 26, 2009 5:15 pm
276
eric .
goldteam19
Jul 26, 2009 5:16 pm
Thank you Norma, i have hope, my tumor was discovered at an early stage , it might be help... who knows. ________________________________ De : najones11...
277
Tina Rosen
tinasfunstuff
Jul 26, 2009 5:26 pm
Best of luck Eric. We're all in this together, as they call it "the orphaned tumor." Having just returned from the 2nd Annual Chordoma Conference, held in...
278
Tina Rosen
tinasfunstuff
Jul 26, 2009 5:31 pm
Dear Suellen, Sincere condolences. With the support of your loving family and friends, and of course this group, know we're here for you in any way. ...
279
Tina Rosen
tinasfunstuff
Jul 26, 2009 5:34 pm
Thanks so much Norma. It's so wonderful to share GOOD news with hope that there will be more and more of this from everyone. Your response means the world to...
280
Tina Rosen
tinasfunstuff
Jul 26, 2009 5:38 pm
Hi Rodney, Thanks so much for your note. Remember, worrying about tomorrow ruins today. Enjoy every day to the max, cause right now is what counts! And of...
281
eric .
goldteam19
Jul 26, 2009 6:20 pm
Hi Tina, thank you for theses informations, i'll check the web site. i'm not alone my lovely wife, my kids and my familly support me. It's very difficult in...
282
Tina Rosen
tinasfunstuff
Jul 26, 2009 8:54 pm
Bonjour mon ami! Perhaps you can offer to translate on this site, as there are others who have come from your country as well as Canada, who have a tough...
283
eric .
goldteam19
Jul 26, 2009 9:48 pm
May be Tina, but i see you know a few words in french too. i visited the chordoma foundation website and i saw the average survival is 7 years. Do we have...
284
uswoods5
Jul 26, 2009 10:02 pm
This is Ann, the group manager, just back from a little log cabin by a lake. I was diagnosed in 2002. I didn't appreciate the "7 yr" thing much either. Most...
285
Tina Rosen
tinasfunstuff
Jul 26, 2009 10:17 pm
No way Jose!!!! That's indeed a scarey statistic for anyone, and it seems there's a higher morbity/mortality rate for the children with the disease. Each...
286
Tina Rosen
tinasfunstuff
Jul 26, 2009 10:18 pm
right on Ann! I'll second that! hugs.....Tina ... From: uswoods5 To: Chordoma_Support_Group@... Sent: Sunday, July 26, 2009 6:01 PM Subject: Re:...
