Bone cancer

A place for people affected by primary bone cancer (including osteosarcoma, Ewing's sarcoma and chondrosarcoma) to support one another, ask questions, and share their experiences.

Chordoma of the base of the skull and imatinub trial

willard68
Posted by
I was diagnosed with chordoma of the base of the skull in 2012. Chordoma is a rare bone cancer. I am now on the imatinub trial at 400mg. I am looking for support from others in the same situation. I know how unlikely it will probably be for me to find someone with a chordoma of the base of the skull but there's always trying. I'm also wondering if anyone else is on the imatinub trial.
Willard Ford
KateG
Posted by

I'm sorry you haven't had a reply to date. You could try "ANYONE ELSE ON THE IMATINUB TRIAL" as a title or you could call one of the lovely nurses here on this site for a chat. They operate Monday to Friday 9am to 8pm on FREEPHONE 0808 808 0000.

Best wishes

KateG


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willard68
Posted by
Hi Kate. I myself can not phone the helpline, I have hearing and speech problems from the pressure from the skull from the cancer. In bad days, my speech is very poor. My wife has used the helpline on my behalf for financial advice etc. That is a reason I decided to join the online community. I will just hope someone replies and I may open another forum with that title. Thanks anyway. Willard
Willard Ford
Angeliz
Posted by

Willard68, I was just diagnosed in January 2018.  I endured a 7 hour surgery that was suppose to remove 95% of the tumor.  However, the tumor was also wrapped around my spinal cord as well as other vital tissues.  I spent 6 weeks of intensive radiation that ended on May 4.  I am terrified that they did not get it all and the side effects of the radiation are horrible. Please tell me about the treatment you had after diagnosis. I am also having pain in my sacrum and lower back and I am afraid there is a tumor there as well. Any advice you can offer would be appreciated.  

Angeliz