Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Andrew, it is a very good result, congratulation!
Can you be more specific please. Is NCT02458638 given in a clinical trial that Genentech (a subsidiary of Roche) is running in Toronto? We already are watching few PD-L1 drugs - Immune checkpoint inhibitors ICI (PD-1 and PD-L1 targeting drugs) - we have the topics open here in the clinical trials for the drugs only avail. on the trials here:
http://www.cureasps.org/forum/viewforum.php?f=73

and in the regular treatments for the drugs avail. to be prescribed off label:
http://www.cureasps.org/forum/viewforum.php?f=70
Off label means that drugs can be prescribed for the diseases other than in was approved for if the oncologist has a valid reason to expect it be beneficial for the patient. Sometimes our patients help each other with the information to establish doctor to doctor direct contact in case someone is getting a good response and helps other to get the same drug off label. It looks like it is only now approved in US but not yet in Canada.

I can now open the TECENTRIQ (atezolizumab) topic in both of the topics as it is avail. on both, clinical trial and (potentially) off label settings.

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

Vega343 wrote: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

Thanks Vega.

Hi again Andrew

My question to you would be was the Atezolizumab used with NIH as Auz had progressed after taking Cediranib and sutent in the first clinical trial?

Does it have alot of the same qualities as Opdivo?
I'm a little lost in toggeling back and forth between searches.


Thank you in advance

Wow Andrew I'm astonished of the result I see. This is amazing and very promising for a lot of us fighting this desease

MartinBube wrote:Wow Andrew I'm astonished of the result I see. This is amazing and very promising for a lot of us fighting this desease

Thanks Martin

Auz never did Sutinib (sp?).
Different things work different for different people. Just keep trying untill something works.
Latest indicator might be microsatellite instability as a marker for immunotherapy.
I'm sorry i don't have more info.

Thank you Andrew
Was Auz tested for the PD protein ?
I believe that some clinical trials HAD required the presence of high volume of the PD content prior to accepting patience

However to date the testing results of the protein is still questioned

Andrew, I was reading on this drug after you posted and as I understand TECENTRIQ is only avail. in Canada in a clinical trial setting, so Auz has to be on a clinical trial in Toronto. Trial enrollment criteria and testing details can be found here:

ClinicalTrials.gov Identifier: NCT02458638
https://clinicaltrials.gov/ct2/show/NCT02458638

Olga wrote:Andrew, I was reading on this drug after you posted and as I understand TECENTRIQ is only avail. in Canada in a clinical trial setting, so Auz has to be on a clinical trial in Toronto. Trial enrollment criteria and testing details can be found here:

ClinicalTrials.gov Identifier: NCT02458638
https://clinicaltrials.gov/ct2/show/NCT02458638

Yes, as i said in the second post down from the scan image.

I am pleased to update what I have heard re. Auz current situation from his father.
Auz was on a clinical trial for Atezolizumab (Tecentriq) in Toronto with Dr.Razak, responding very well till he developed an autoimmune colitis. So he was taken off the trial.
As of now he has been off Atez now for over a year and a half. October scans were NED progression.
The colitis issue is still present but Metamucil seems to moderate the issue well.

Thank you for the update , Olga .
Andrew and Auz , I’m sorry to hear of the colitis but extra happy to hear of NED progression !
Andrew, any need of steroids ?
Have you all talked to gastrointestinal doc about the
“Elimination diet “ ? Reducing dairy?