Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi there She has not had a brain MRI, the PET-CT scan also included her brain. No mets showed up on the scan thankfully. I am keeping positive thoughts that chest, abdominal and pelvic CT scans will show the same results. I will also ask the doctor to order a brain MRI... I do not expect them to fin...

Hi Olga, Bonni and Amanda, Thanks for your messages. I will definitely ask why the doctor wants to go forward with radiation therapy and discuss it with my Mom. I am frustrated to find out that the PET-CT scan is not as precise as just a CT scan. I will ask the doctor to order the chest/abdominal/pe...

Hi Amanda, So sorry to hear about your persisting dental problems! A few years ago I had awful pain in my mouth which turned out to be a nerve dying and led to a root canal. The only thing that helped me before I finally saw an endodontist who took out the dying nerve was clove oil.. it numbed my to...

Also, Ivan - if it is rare for the tumor to grow back to the primary spot, why would she need an MRI of the primary spot? I just want to be ready with all of my questions tomorrow. I live in nyc while my mom lives out in LA, I'm only here for the week to help my mom out so this is my chance to ask t...

Hi all, Thanks for all the feedback. Her surgeon at UCLA wants to do radiation to make sure all of the cells in the area are dead... I'm sure to prevent any tumor from growing back in the same place. I will ask tomorrow exactly why and bring up what you have told me about it may not being necessary ...

Hi! Yes we are so happy. About to carve pumpkins with my little sister (she's 10, I'm 22). They have sent the tumor and muscle to the pathologist who will analyze it to ensure clear margins, I believe. Doc said the pathologist will study it to make sure that they do not need to go back in to remove ...

Hi all, I wanted to give you all an update. My mom had a full body PET-CT scan on 10/17 which thankfully did not show any spread! On Tuesday she had the tumor removed from her right thigh. The doctor said it was the size of a softball, yikes! In 3 weeks once the surgical site is healed she will star...

Hi Amanda, Thank you for your reply. My family and I are all currently on vacation for a wedding, so my mom has not been 100% focused on her diagnosis yet. However, I do think she would love to speak with you about ASPS eventually. We are all processing the diagnosis in different ways - I am a plann...

Hi Olga, Thank you for your reply. Unfortunately her primary doctor cut into her leg before he ordered the ultrasound. The doctors at cedar Sinai are not in her insurance group. However, if there is another doctor at ucla that is more experienced with this type of sarcoma we may be able request his ...

Hi Debbie, Thank you for your reply. My mom lives in california, in the LA area while I live in nyc. My step father already has medical power of attorney. She is currently employed, however she is on my step father's insurance plan. He works for a small company, with no HR department. From our frust...

Hi there, My name is Jolie. Today my mother was diagnosed with ASPS. Four weeks ago she felt a large "lump" on her right thigh and saught medical attention at the local urgent care. They misdiagnosed it as a harmless hematoma, and told her it would go away on its own. After a week it was s...