Cure Alveolar Soft Part Sarcoma International (iCureASPS)

2015 ... Hi Everyone! Just an update on my beautiful sister Joanna. So Joey had been doing super well on the cedirinib trial in the UK but unfortunately had to have spinal surgery (t7 removed) due to a tumor (or an existing lung met pressing and attaching to her t7 - where still not sure?). Therefor...

So good news - Jo's scans were re-measured in the UK and she was in fact stable. 12 weeks have passed and her latest results (Monday this week) Jo is stable again.

We may have a little luck on our side - jo's latest scans were compared to her 2011 scans not her jan 2013 so what appears new maybe incorrect. Jo has arrived back in the uk and they are going to remeasure. That roller coaster comes to mind ....

Gosh it feels like a life time ago since I first made contact on behalf of my beautiful sister Jo. Since Asps came into our lives (just a little over 2 years ago) we are no longer the same people. Asps forces you on a roller coaster ride and one you didn't want to take - but it has made us stronger ...

Hi Everyone, Just an update on my beautiful sister Jo. Jo has finished her first cycle of sutent, 4 week on 2 weeks off. Only bloods were taken and all fine – so she can continue to take sutent. So this is where the next episode begins. I question why would any hospital make it so hard for a patient...

Hi Dotty, Thank you so much for your thoughts and prayers for Jo - I too am sending positive thoughts and prayers to you and Jordanne. It's all still surreal - and to be given no real options it is very frustrating - as like I said Jo is (otherwise) heathy and active. Im going to look into the Cedir...

Hi Bonnie, Thank you for responding and for all the information - I will pass on immediately to Jo. Jo will make contact in time - I think it is a great website how people can access such valuable information from other people suffering this terrible disease. I will look into the trial you mentioned...

Hi, Let me start by introducing myself, I'm Mel, my sister is Jo. Jo was recently holidaying in the US (12 weeks ago) when she had an attack, at the time we thought it was a suspected Appendicitis. Jo was flown to Denver where she had several tests, xray, ct scans revealed she had 2 x large masses i...