Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Quickly approaching the 6th month mark, going through some old things and remembered a request I got to post a picture of Cory. I am trying to remember the good times so decided to stick to a picture from before his diagnosis. This one is from 3 years ago, on our honeymoon in Jamaica.... hope the at...

Hi everybody, I am sorry to report that on September 6th Cory passed away--14 short months after being diagnosed. I haven't been able to bring myself to posting until now, I am sure you all understand. Since my last post I can say things slowly and steadily worsened day after day. By mid June Cory s...

Sorry it has taken a awhile to repost, it has been a crazy crazy two weeks! So Cory was released after being in the hospital for 3 days. They told him the spot in his spine was actually on the spinal cord, further complication the situation. Luckily it's only one small spot in the lower spine, but i...

Thanks so much. I will get on that asap... He just started pazopanib 2 days ago so hopefully it does help. And We only have preliminary results of the spinal MRI so far, so we don't know how big or how involved, but they definitely seen metastasis to his spine. They requested 2 more MRIs for today, ...

So April 1st was the official date of amputation. Everything went well overall. He had trouble urinating after the epidural was removed, which we were told is somewhat common after surgery. Cory spent 2 weeks in the hospital, and 1 week in a rehab facility... They continued to catheterize him the en...

Just a quick update for everyone since so much is changing.....yesterday Cory woke up with a great amount of redness and new swelling on his knee--right below the incision scar from his biopsy. We have been watching it the last few months cause every now and then it would look like it was expanding ...

Yeah Olga it was in combination with Temsirolimus I believe. We meet with the Oncologist again on Tuesday so I will be sure to ask if ASPS has been tested in particular. Thanks for your research!

Thank you Bonni and Olga for your quick response. Sorry it's taken a while to respond but with all that info we have been extremely busy getting all Cory's records together, researching and contacting each of the suggestions you both made. We finally decided and got an appointment set up at MD Ander...

Thanks for your quick response Olga. I'm not sure how to answer your question about how big the bone involvement is.....? The initial scans showed that the distal end of his femur was involved just around the knee cap area. Couldn't tell you what the actual size was tho, sorry. That's absolutely pro...

Hi everybody, I first want to thank everyone for all the valuable information that's being shared on this forum. My 26yr old husband of 2 years, (and high school sweatheart :) ) was diagnosed with ASPS about 7 months ago when he went to the doctor for having a "swollen" knee. We had though...