Cure Alveolar Soft Part Sarcoma International (iCureASPS)

All I have to say is that my thoughts and prayers are with you!

Everyone-- It is with a heavy heart to let you know that Anthony has passed. He passed today at 1:45 pm. We have requested that his tumors be used for ASPS research. If you would like any additional information, please visit www.caringbridge.org/visit/anthonysalisbury I miss him more each minute, Kim

Charity--

I am so sorry to hear of your disease progression. I'm glad you going to continue to be a trooper though! That's great. Are you going to continue the Yondelis trial or try something else? What are you going to try next?

I hope all is well.

Sincerely,
Kim

Bonni and Fernette-- Thank you so much for your kind responses. I don't know if I can ever express how much this forum means to me. You have all truly helped us during our progression throughout this trying time. I really don't know if I can write how thankful I am for you. I was speaking with my fr...

All-- It is with horrible news that I have to write that Anthony's disease has grown. He has been on Sutent for approximately 3 months now and there was significant progression in his disease. Some as much as 10 mm or whatever they measure on scans. His doctor has recommended hospice, but after talk...

Did anyone see the USC quarterback dedicate the win to an ASPS patient? My brother was watching and said he did....do you know if it's on YouTube or anything like that?

Thanks!

Hey all-- I hope the Holidays are treating you well. I thought I would provide a small update in case some of you don't subscribe to Anthony's Caring Bridge page. Anthony is doing much better. He has found a renewed love for Legos! It's kinda cute to know that what comforted you as a child is the fi...

Hi Everyone! thank you for the notes! Anthony is now on oxygen - which seems to be helping. His foot is horrible swollen. I did talk to his radiation oncologist today about Gamna knife, cyber knife and radiosurgery. He said our biggest problem is that AJ can't lay down (it causes him to not breath, ...

Hey Olga!

I have just emailed Dr. Luketich and Dr. Littrup. I hope they respond. Last night, Anthony had to sleep in the tripod position to help him breathe. I really hope they respond soon. I'll call Dr. Okuneiff over lunch to see if he can help.

Thank you!

Olga-- We talked with Anthony's surgeon and he noted that the Stent would actually not provide him with an overall benefit in the end. Apparently it is on a nodule that wouldn't enhance his breathing that much and he would be guaranteed to be put on a respirator. So, we will not be doing that. We di...

All we keep hearing is that they can't operate. When we talked to Maki, I asked about removing some nodules and other thing that we could do to remove some and all they kept saying was that we need whole body treatment and not just lungs. Anthony is wheezing horribly and can't do much - so they thou...

Hi All-- So we finally talked with a sarcoma doctor at the U of M - Dr. Skubitz. Dr. Skubitz has immediately put some things into action. Anthony will be getting a blood transfusion on Thursday and will commence radiation on his primary this afternoon. His primary is in his calf/ankle and is limitin...

Hi Everyone-- We are considering trying to put a stint in one of Anthony's airways to make his breathing better. Have any of you done this? We were all for it until the doctor mentioned signing a DNR report before we have it done. We thought it was a minor surgery with the only complication a possib...

Olga-- Thank you for your reply. Anthony is actually meeting with a surgeon here tomorrow to talk more about the possibility of taking out some of his tumors. Or what we need to do to get ready for them to be operated on...e.g. what our goals should be. So that's good! Also, we have started taking m...

Hi Cricri-- I hope all is well! My fiance, Anthony, has brain mets and uses decadron. He loved the drug at first b/c it decreased his brain swelling, got rid of his headaches and increased his appetite. So he took it for about three weeks and loved it. Then he tappered off. He started having issues ...