Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Ivan wrote: ↑Sat Aug 14, 2021 12:04 pm

Sunman wrote: ↑Mon May 24, 2021 8:59 am She had 2 nodules removed. Each was 3mm. One came back positive for ASAP.

What kind of follow up is she on presently?

We were doing scans for chest every 4 months. For one year with contrast. We are on a 6 month schedule currently. We did have head and abd scanned also

It’s been two years for Mira. So far we are clean on chest and abdominal scans. We will do a full scan per schedule on this forum next appt. She has been doing great so far. Her initial full body scan was clean except for one met 3mm in lung. Everything was resected.

She had 2 nodules removed. Each was 3mm. One came back positive for ASAP.

Hi, welcome to our forum community. We are very supportive here and are ready to share all the information we have about this extremely rare sarcoma, and we appreciate when patients or their families share what they can in return. I also agree that doctors are also people with their own opinions an...

My daughter Mira was diagnosed with ASPS a few months ago. The tumor appeared when she was 18 months old. Right chest wall below clavicle. The doctors initially diagnosed as a hemangioma. We followed up yearly The tumor kept growing so we decided to resect a few months ago. When the tumor specialist...