it took me serveral weeks to get everything too,,glad i could do something, there is a contact info on paperwork if there was any questions or concerns,i hope...
HI, I'm new to this. my boyfriend is 27 and recently got diagnosed with chordoma on the sacrum. he has had pain in his leg off and on since last august and...
Hello Nicole, Sorry to hear about your boyfriend's tumor. The diagnosis is always so shocking, it takes a while for the news to sink in. You are doing the...
Dear Nicole: I echo LaDonna's thoughts and will add my own. I politely hope you read through my list carefully. 1.) Your boyfriend and you will most likely get...
Hi Nicole, I know what you are feeling and it is overwhelming. BUT, we both found this group, and we must have faith that there was a reason for us to be led...
hi susan hes going on march 14th up to boston for his first consultation with the chordoma group. Everything is just so frustrating right now. my first...
Yippee, Boston here I come. I have received a grant from the Australian government that will allow me to fly to Boston Mass General to have proton beam...
Great, it may have stopped snowing by then. Seriously, I had a good time in Boston, fitting in the proton beam in my spare time. Make sure you see some of the...
Primary chordoma is slow. Mine showed up on an x-ray three years before diagnosis [no thanks to the idiot who decided my skull wasn't fractured but didn't...
I had a sucessful "resection" , good margins, no recurrence, etc, at the Mayo Clinic-Dr. Frank Sim Austin ________________________________ From: ShaneK...
Carol: that is great news. I think its wonderful that some countries have this arrangement. Good Luck in Boston and keep us posted. Its a great city and the...
I also had a successful "resection" (sacral chordoma 10x13x9cms), good margins, etc., at Vancouver General Hospital, Vancouver Canada--Dr. Michael Boyd and ...
Ann, I'd forgotten that you had that happen to you too. We're twins in that way, my first MRI in 1998 clearly showed my tumor, but it wasn't detected until a...
Nikki, I am 5 months out from my surgery for sacral chordoma. I have been managed at Mass General in Boston and I loved all of my doctors and nurses. They...
found out tuesday that my clivial chordoma has no regrowth !!!! almost 3 years since pb radiation.....love docs at ucsf , i been having MRI for 4 years now and...
My dad just got some awful news today. Despite all of the treatment that he received since 2006, for his thoracic spinal chordoma, the damned thing is ...
Lisa, I'm so sorry for you, your dad and your family. My thoughts and prayers are with you all. Just please don't give up hope. I've only been diagnosed 6...
Oh Lisa, I feel for you. I've been a lurker in this group for a while now but they sure came to my rescue in 2007 when my dad went through some horrible...
Hi Melanie I can't tell from the message if it's the MRI that caused your panic attack but I wanted to pass on something I learned. I have always had a hard...
Hi Lisa Sorry to hear about your father. I am at a stage where the doctors are trying to get approval for the Gleevec. this thing is like a bad penny - just...
Lisa, My heart goes out to both you and Martina, as you suffer disappointment at the failing health of your fathers. It is true though that the chordoma ...
I am so sorry to hear about your father. Stay strong because he needs someone he could lean on. ... From: Oregon Green Thumb <sa2m44@...> Subject: Re:...
The bad penny reference is a good one...I'll have to tell dad...we have to keep our sense of humor, if nothing else! Thanks so much for all of your kind...
