Chondrosacroma of the skull
I have read some stories on here with people having Chondrosacroma's. Since it is so rare and no treatment that I know about . I am always desperately searching for any new information available . My husband has a Chondrosacroma of the skull . His returned 27 years . We were completely shocked . He had radiation and we were told it was stage one 27 years ago. The tumor came back in the skull again near the Clivis bone . He had another major surgery but this time , there was a small
piece close to curated artery and they could not remove it . We have scans every 6 months of his skull and entire body and blood work . I am terribly anxious that it will grow . He has already lost complete hearing on one side , he one vocal cord . His surgeon at Jackson Memorial hospital has left , so we have to start over with a new one . Right now he is being monitored by his oncologist. Has anyone heard of any new treatments for chondrosacroma’s or has had a tumor in the skull area ? I am always looking to connect with anyone in a similar situation or has had success with a treatment. Thank you so much for listening . May all who are going thru this battle , be well . I am so worried about what we may be facing next . Just looking for any information .
Interested in more discussions like this? Go to the Sarcoma Support Group.
Anyone here have a chondrosacroma of the skull ? I have been researching so hard for my husband who has a piece of the tumor too close to his curated artery and could not be removed after surgery . It’s stage 2/3 . We are having a pet scan because two years post surgery , the doctors have noticed a change in growth .😢 We are told our options are limited . There is a drug called Ivosidenib, they could put him on , but it still
has not been proven to stop the growth. I am very worried. Any help would be appreciated.