Cure Alveolar Soft Part Sarcoma International (iCureASPS)

we have been amazed at tumor reduction on Atezolizumab trial from NIH in the US. 40% tumor reduction in 5 months! Her largest lung tumor was over 4cm. She has had little to no side effects of this treatment! Link to the trial: https://clinicaltrials.gov/ct2/show/NCT03141684?term=Atezolizumab&con...

we have been amazed at tumor reduction on Atezolizumab trial from NIH in the US. 40% tumor reduction in 5 months! Her largest lung tumor was over 4cm. She has had little to no side effects of this treatment! Link to the trial: https://clinicaltrials.gov/ct2/show/NCT03141684?term=Atezolizumab&con...

Hi old friends. Debbie, appreciate your success w weight gain! We had scans and NIH visit this week. Showed slight progression, but long story short, we are now over the 20% progression threshold for the cedirinib study, and need to be done with that treatment. (Removed from study after 33 months). ...

Hi All - Visit to NIH late June shown no growth of the lung tumors, or the pelvic tumor, and the brain lesions are very small (almost undetectable). So we remain on Cediranib study for at least 3 more months - next visit mid September. Biggest issue is her keeping her weight, managing some pain, and...

Reading through the story - great news the med has minimal impact on her life and everything remains stable!! Prairie is taking 15mg 5 x week - and struggles with keeping weight on, and energy levels. The diarrhea is manageable. She is a tiny thing though, 60lbs @ 12years old. She has had less than ...

Hi there - I think her biggest lung let is >4cm. Her breathing seems uneffected, not sure how this is possible, maybe she doesn't exert herself. Brain mets still there, unchanged. I did see the Atezolizumab trial is open, we will see. Any new amazing meds people have used lately that are effective? ...

Hi All - Prairie remains on the Cediranib trial out of NIH in Bethesda, it has been over 2 years! Residual pelvic tumor and scar tissue - unchanged Brian mets - unchanged Lung mets - 16% increase over the last 2 years P is feeling ok, needs alot of rest and works hard to maintain her weight. She has...

Hi friends - Prairie is still doing well, still on Cediranib clinical trial at NIH in DC. All met's stable since slight growth detected in Sep2016. She is still getting full scan work up every 2 months - our last visit was at the beginning of April. They do brain and pelvic MRI's with and without co...

Jussi, Just please know we are thinking of you from Lincoln, NE and hoping for good results. I love the logical way you approach this all and am following your case every step. Tons of emotions, but still, and I hate trial and error approach, but asps seems to be this way. Thanks for your updates, y...

Thanks all. Prairie just has diarrhea, which is controlled in a few hours with the Imodium and gas x we get through the trial. It is evident her level of sleep plays a role, which we try to control while balancing all she wants to do. For Debbie, yes, the scans are all at NIH in DC, so we have estab...

Hi there - December scans showed stability as compared to the previous in October. The growth since she has started the study in March is essentially limited to her lung mets - and from March 2016 - October 2016 there was slight (~10%) growth. It appeared to happen on the scan between August and Oct...

Andrew - incredible!
Would love to hear the latest and the details! How is your son doing? The scans you shared are similar to my daughters lungs at the moment and we are on Cediranib with "stable" results since March 2016 - his scans look like an amazing improvement!
MJ

Olga - Thanks for the detailed update - and info on wonderful doc and surgery. It is so amazingly helpful that you share this - may save some of us the trouble down the road of going through the same difficult research you took on. Hope for more great news - Ivan - you are one of a kind - a tough, s...

Dear ASPS friends - Late reporting October scan results: Lungs: Very slight growth overall Brain: stable Pelvis: Stable The results essentially showed very slight definite growth in lungs since starting the Cediranib trial in March. They review her story overall, comparing when she started in March ...

Hi Benard - Yes, you are not alone. Unfortunately, there is lots to think about for treatment. The tumor was removed - you need to ask if they were able to get positive margins. This is the area around the cancer all the way to the non cancerous cells. It indicates if they got it all out. Then is th...