Jaw bone metastasis

[Olga]

This information is reposted from Jordanne personal topic shared by her mother Dotty on this board earlier:

This is the story of my daughter, Jordanne, and her battle with ASPS.
August 2009 Jordanne went to see her dentist for a root canal due to numbness in her mouth. After the root canal, the area was still numb and her dentist saw a dark spot just at the bottom edge of her Xray. He because concerned and sent her to an oral surgeon in Olympia to do a CT scan of the jaw where they found what seemed to be a tumor in her lower mandible. When the surgeon did the biopsy, he commented that he couldn't get it all because there was so much bleeding. They sent the tissue to the University of Washington for dx and we expected results in a week. 5 weeks later we were still waiting and they couldn't figure it out. After they mentioned that it might be some type of rare. I started investigating her symptoms on the internet and saw some mention of different primary tumors that start in the lower extremities. This made the connection that she had a swollen thigh that she thought was a pulled muscle that was becoming more painful and that had been giving her problems for months. So we called the oral surgeon with this bit of information. Low and behold they were able to make the connection and dx that she had ASPS. With further MRI and CT scans revealed that Jordanne had about 45 small lung mets as well

By now, we know of 2 confirmed ASPS cases jaw bone mets.

[Amanda]

Maybe three with me..

We will know around December 2nd if this is infection or sarcoma

[D.ap]

Olga
Moved discussion to Amanda's personnel

[Bonni Hess]

Dear Olga,
Are you including TAAASPS ASPS patient Rosie F. in your count of those ASPS patients who we are personally aware of who have had ASPS jaw bone mets?
With special caring thoughts and continued Hope,
Bonni

[Olga]

Yes Bonni, this is correct, some lost information from the former web-site is still fresh in my memory.

[Bonni Hess]

Dear Olga,
Thank you for opening a section on the forum for this jaw bone metastasis topic. I too remember much of the information from the now defunct TAAASPS site, but sadly the invaluable shared anecdotal treatment information from that site is now lost and no longer available to us nor any of the post TAAASPS ASPS patients who could certainly benefit from it.
With special caring thoughts,
Bonni