Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Heya all, Most of the information and updates about me are under the "Personal Stories and Updates" http://www.cureasps.org/forum/viewtopic.php?f=4&t=728 but I thought I would start a separate pazopanib related thread more along the lines of stat tracking for all things PAZOPANIB...inc...

hello all! So the results of my full body PET/CT and sacrum MRI came back but they have not sent me the official report yet (I keep asking but they have always been slow with documentation). Noah told that there is evidence of slight shrinkage in the sacrum tumor(yay!) which is why I'm feeling bette...

Thanks for all the info. To answer Josh's question, my doctor wants to see how I react to Pazopanib then move onto trying other TKI's depending on how I respond (or how my tumors respond to it). I may end up trying Sutent, Cediranib later but Pazopanib is first on the list since its approved by the ...

the biggest met I have is around 1cm, which is the one that Dr. Federman is worried about. He was recommending SBRT to remove it but Rolle did not like that idea (since it might interfere with future laser surgeries). So far nobody recommended interferon, only sutent and pazopanib (since Sutent is n...

Hey all, I need some more advice! Because of my last CT scan (late January) both of my doctors (Noah Federman and Rolle) have agreed that I should start on Pazopanib, mainly because I have an unusually high tumor count and the doctors in Germany could not remove all of them plus there is already evi...

Ivan: Good to hear Ivan, the side effects are another reason that I want to hold off on the TKI treatments. Mikko: I will say hi to Rolle and the other doctors for you guys! So question to Rolle patients (since I am due to go during the week of November 12 till mid December): -How is the temperature...

hey all, Thanks for all the responses and support, this forum is giving me the tools to make a decision that I feel more confident about. So I have decided to continue with the planned surgery of my left lung by Dr. Rolle. Why I made this decision: -Delaying this surgery in hopes that the TKI's will...

Oh, and it case you didn't realize that was me, Connie. Borrowed Kevin's laptop, didn't realize I signed in as him, not me. Doh.

Hey all, Kevin just got moved out of ICU this morning. No tubes removed yet, Dr. Rolle wants to keep the two tubes in for now as he says the damage was considerable and they need to stay. They tried weaning him off his 2nd painkiller today, but by evening (it's about 7:00pm here now) the pain was so...

Great advice Olga, thanks. I will be extra careful and walk whenever I can. I do tend to over exert myself with false confidence. I just ordered a TEP wireless portable wifi device to use while we are in Germany. It can connect up to 5 unique devices ( our laptops, iphones/ipads ....netflix! ) The i...

Hey all, This is Kevin and I have finally made the time to participate in this forum! First I just wanted to say thanks to Olga, Bonnie and Ivan for posting such useful information about all things ASPS including the Dr. Rolle visit. Reading his journal has set up my expectations for my trip. Dr. Ro...