I hope you get an answer from Mass General soon. They have the most and longest experience with chordoma radiation. This is conference season so responses can...
It's been awhile since I've been on--life was good--now it's not! 5 years since 1st surgery(sinus)and 4 years since PTB. Tumor is starting to grow again--will...
Marshazz, I had repeat surgery 6 years after first surgery. 2nd surgery was in April of this year. Cannot have radiation again as PBT is a one shot deal. ...
hi marshaaz Sorry to hear about your recurrence. Had firt surgery (Aug 07), plus Proton & IMRT (nov07-jan 08). second surgery and IGRT in march-april 08. Now...
I just finished my 5 and last cyberknife. The remains of the clival tumor was only about 5 mm. so they feel that the success from treatment of previous...
... Yeah. Keep everyone posted. This was the treatment of choice for me in 1995 if I had needed further treatment. I hope it is 100% successful. Fae Kelley...
i had surgery at ucsf 2/08 and protin beam radaition in boston 6/08 i am having weight gain, massive headaches,and hormaol issues ....is anyone else?? any...
If you are taking medications they are probably steroids and those always cause me to gain weight. Headaches are a fact of life, sometimes mine are worse. I...
Hi, I don't know how relevant my experience is...since I had my Proton Beam Radiation in boston 6/01...but here is my experience- I agree with Sharon, the...
I would suggest that you see and endocrinologist to run some tests to see if your pituitary gland has been affected. Are you getting any night-sweats? Doug &...
Have you seen a doctor and had a post radiation MRI? In my experience, you need to take concerns to your doctor quickly. I have a deal with my family doctor -...
All the best to the people heading for the Chordoma Foundation conference in Bethesda, next weekend. It's a rare opportunity fot members of this group to meet...
i am seeing a neuro-enconoslogist at ucsf and have had my post-proton mri , my hormones they said are ok , i only taking vicodin for pain and no steriods or...
Yes, I have the business cards! So see me there. Also, are there any females out there who will be going but still need a place to stay? If you're interested...
When I was having my clival chordoma treated at Loma Linda, I had to take daily trips to the jacuzzi to soak my head underwater to help with my headaches. I...
My wife Amy, my mother Edwinna and I just wanted to relay that it was a privilege and honor to meet (in order) Dr. Simone Sommer, her son Josh Sommer, Dr....
Ed I have to tell you that the outlook for later interventions for chordoma is a lot better now than when I was diagnosed in 2002. There has to be a dependable...
... Austin I wasn't there either. we'll catch up one day! Keep trying for the chemo. One day we are going to get something that works. I'm looking forward to...
Dear Shane, Thank you so very much for the ride. I so enjoyed meeting you and your lovely wife Amy. Your heart and soul shine through from the moment I met...
Tina, it was such a pleasure meeting you. Amy told me to send a big hug back. LaDonna said the meeting was extremely informative, uplifting and emotional. I'm...
Hi Ann I have decided that I will be devoting a great deal of my time to support both your efforts and those of the Chordoma Foundation. Consequently, I will...
Ed: that is great news! We can use all the help we can get to invirgorate this board and make it active, useful, a center point for people to ask quesitons and...
Removed the tumor from my sacrum and took out S2 and below. Saved S1 nerves and half of S2 nerves. Dr. Conrad, from Seattle Cancer Care Alliance, was very...
