Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi all I finished radiation on the 15th of June. Pretty easy. Still a little bit of tenderness around my rib, but the pain is 90% gone. I feel much better now. But what I really wanted to tell everyone is that the NIH has a new study they are recruiting for. This study is for using Cediranib and Sun...

Hi all The met on my rib is just over 1cm. Both radiation oncs I talked to said there should be no problem with radiation on the rib (and not affecting anything else around it). I saw Dr. Hakimian at Cedars (thanks Amanda) and my regular radiation onc here in San Diego. Both felt radiation should be...

Hi all I'm still fighting. I didn't get into the Dasatinib trial, unfortunately. They did find a met on my left rib, so I'm looking into radiating that area since the met on my scapula seems to have worked with radiation. I actually meet with my radiation onc tonight. Something to make all of this e...

Thanks for the very kind words Bonni. I did have a brain MRI and it all came back negative, thank God. I will be getting yearly brain MRI's from now on so thank you all so much for that advice.

Hi all I'm done with my radiation sessions. No side effects to speak of. Of course, we won't know if it really worked for a while now, but it really has helped ease the pain I was feeling. Before radiation and without taking any meds, I'd say my range of motion was about 30%. Now after radiation (st...

So I had my appt and simulation today. I did ask my doctor about the effects of radiation and whether this will really work. Of course, I got the, "your cancer is rare" speech I've become so used to hearing. He said in most cancers, you still have to go case by case but use what's been don...

Olga, that's what I was thinking. There are multiple mets in one bone. I was going to ask my doctor how fragile my scapula would be if we were to do ablation. The surgeon already told me if I lose the use of my scapula, I'd be very limited in the use of my right arm. Resection wouldn't work with the...

So I've been reading around the board and around the internet, in all of your opinions, are tumor resection and ablation the best methods of getting rid of this disease? I've read that while Cediranib can stunt the growth or even shrink them, resection still is recommended. I am going to ask my radi...

Hi all To answer a few questions, the mets in my lungs are only between 1cm and 2cm in greatest length. CyberKnife appears to have worked so far on the ones we targeted. Those mets have stabilized and begun to shrink. The others have not had any growth since the summer (nothing was done to them yet)...

I've been getting pretty good care at Scripps Healthcare here in San Diego. My primary oncologist is Dr. Joan Kroener. She's been having me get CT scans every 3 months or so to monitor my lungs and an abdominal CT scan every year as well. The pain in my kidney area is pretty recent, so I'll be askin...

Hi everyone... my name's Will Nocon. I ilve in San Diego, CA and I've been battling ASPS since 2002. My original tumor was in my left thigh and they found some mets in my lungs (like 4 or so). I had surgery to remove the tumor from my thigh (lost 70% of my quads), had a rod and screw inserted into m...