Cure Alveolar Soft Part Sarcoma International (iCureASPS)

So does diet and what we put into our bodies really matter after already haven been diagnosed with metastatic ASPS?

I did have a PET/CT scan in the summer which did not show any of these Mets. It was done in July. I met with Dr. Burgess at UPMC in Pittsburgh and she feels I would be a good candidate for her clinical trial where Atezolizumab is administered. I am currently in Baltimore and have an appointment with...

Just got results from brain MRI and pet/ct scan. Brain is clear but spot in bone of head. Also spots showing up in both legs, spine, pelvis, both humerus and clavical. I can’t believe it. I had scans in July and none of this showed. I am so scared. I have a meeting with a sarcoma specialist tomorrow...

Daniel, You’re right and I need to look on the bright side of things (like a slow moving cancer) instead of focusing on how this is going to kill me someday. How wonderful that you have 1, 3, and 5 year children but how hard it must be going through this while raising them. I do know that being diag...

Olga and Debbie, Thank you for responding to me. It made me feel better reading your messages. My tongue mass started out 2.8 x1.9 x2.6 and quickly grew to 4.0x 3.4 x 2.8 they claimed likely bc of the needle biopsy and surgical biopsy. My breast mass is 1.4 cm. I was ordered a pet scan but asked the...

Ivan, my oncologist just ordered a PET scan for me next week as the ASPS in my tongue has spread to my breast (I found the lump so they biopsied it) and diagnosed it as such. Should I be asking for a different test as I had a PET scan in July of this year and it did not show anything except for the ...

I was diagnosed with ASPS of my tongue in July of this year. I live in Pittsburgh and went to UPMC but also had a second option at Johns Hopkins. We decided to get surgery there with surgeons from the otolaryngology group and I had 80% of my tongue removed. Surgery went well although I have some dif...