Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Thanks for the helpful advice regarding alt treatments! Sam just celebrated fighting this crazy disease for 10 years by starting the Axi/pembro study which he is tolerating well. The biggest side effect so far is fatigue. Also, it appears the bronchial embolization procedure for his largest lung met...

Hey, Sam's was to start the axi/pembro trial this past Monday but hurricane Irma interfered with those plans. However, we have a new appointment to get started on the trial protocol this Monday so I'll update his experience. The disease progression in the lungs and tail of pancreas changed our treat...

Hey Luke, I was hoping to get an update on your treatment status since my son will start this treatment next week? He still has to complete a biopsy and pet scan. Hope all is well!

Thanks for the information regarding the surgeries and systemic treatments. We are holding off on the Alotinib trial due to sam's recent bleeding issue but plan to discuss doing the Axi/Pembro treatment instead. We will be traveling to Miami to discuss treatment options but due to his recent increas...

thanks for the update on your treatment with pembrolizumab and hopefully you will continue to have positive results!
We are looking at the Pembro/Axi trial in Miami too. Take Care

Yes, they said it was a tricky location since they could not see it in first bronchospy procedure. Was going to do that axi pembro trial but Dr. Will thought Alotinib trial would be a good fit since he could go once month verses weekly.

Sam is going to have the bronchial arterial embolization. We had plans to start chemical trial next week but not sure now what the plan will be. They couldn't do ablation due to location in the bronchospy? Thanks for all the info

Thanks for the quick response because they discharge him not knowing if the bleeding had truly stopped and now we are back at the hospital because he started coughing up blood. The treatment didn't sound correct. The largest lung lesion is in the right hylium ( right hylar lymph node 3.9x4.1cm). And...

Just curious if anyone is aware of a lung/ adrenal met bleeding inside the lung? Sam started coughing up blood with pain in right lung which led to a hospital visit where they did a bronchial procedure which showed no obstructions, but a lesion bleeding so now we are planning to do trial anlotinib t...

Olga, thanks for the update on Ivan and so glad that his brain mri looks good and hope the spleen issue does not become a major concern. We also did a recent bone scan for Sam which it had been a few years and a PET scan, which he had never had before. We are still trying to decide on resection of p...

Welcome to the board, I was wondering if the primary tumor was removed from the hand? While my son was on a clinical trial we were never asked to take a break either so hope you get some answers regarding that decision. Best wishes!

I just wanted say thanks for sharing your positive news and I continue to pray for continued stability until a cure can be found. Take care!

Hey, I just wanted to add that my son recovered from his brain met in the cerebellum and the neurosurgeon acted quickly to get that tumor out and he started steroids right before surgery but was off within a week after surgery. He then did 1 gamma knife treatment 3 weeks later and no more headaches....

Olga, thanks for this very in depth response. I'm sorry that Ivan lost that vein but happy he doesn't have to remove the spleen.I will look into who may do that type of pancreatectomy in the USA since traveling to Germany would not be an option. However, I was wondering how quickly we need to act on...

Olga, I want to thank you and Ivan for posting this info on pancreatic surgery. We thought Sam was going to have his lesion resected laparoscopically as a minimally invasive procedure per oncologist. However, the surgeon said it could be done laparoscopic but would need to remove spleen too. His les...