Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends, I hope this year will be better than the previous one for all of us. Unfortunately my treatment is not successful. Crizotinib did not help me. Now I am on Sorafenib 800 mg daily but the result is unknown. I will know CT scan result in the mid of January. I feel much wors...

Dear ASPS Community Friends, I would like to share my news with you. First of all, Olga and Debbie, thank you for your latest comments. I have been on Pazopanib (for the second time) since January 2016. I have very many tumors and mets (shoulder, spine, thigh, lungs). Some of them responded, some no...

Dear ASPS Community Friends, I am writing to share my news with you. The happiest news is that my son was born in December!!! Now he is 3 months old. I and my wife are so happy with him. Of course, we are busy now but it is a great pleasure to spend time with our child and see him growing. It was ou...

Olga,
Unfortunately I still cannot open your link with immunotherapy.
Many thanks for the rest.

Debbie,
thank you for your link.

Dear All,

Could please comment what you think of the following drugs:

Bevacizumab
Crizotinib

Dear Bonni,

Yes, the trial doctor confirmed that I was receiving Cediranib. Thank you for your insights, we will try to discuss it with our doctor.

Dear Olga and Debbie, Thank you for prompt replies. Unfortunately all the lesions grew but the biggest progression was in lung mets, and moreover some new lung mets emerged. So the lungs were the reason for me to be out of the trial. The growth of the other lesions is within 20% which is considered ...

Dear All, Let me remind my story in brief and share the latest news. ASPS was diagnosed in February 2014, primary tumor in soft part of right thigh, mets in lungs (dozens in both lungs), vertebra Th4, left shoulder, flank-bones, thigh-bones. Votrient 800 mg daily since February 2014. Votrient stoppe...

Dear Olga,

I was very encouraged to hear your opinion!!!

The Cediranib dose of 30 mg per day is standard, at least for the trial in which I participate.

Thank you for support!

Dear All, I am sorry for the delay in reply, I was waiting for the first tumor assessment after 8 weeks of participating in the Cediranib trial. The assessment showed that all the tumors except one in the thigh (not the primary one) are stable. The one in the thigh has grown a little. But overall my...

Hi debbie,
Chest CT, shoulder and thigh MRI without contrast.

Hi Debbie,
Thank you for your support. Tumor assessment is every 8 weeks.

Regarding your latest comments. Just FYI my Russian doctor's opinion. Olga, thank you for your link. My doctor is very skeptical about the trial in Russia you mentioned. Debbie, thank you for your link. My doctor says in his experience there was no response to Pazopanib for the second time (after Su...

Dear All, I would like to share with you my latest news. I am participating in a Cediranib trial in Spain. The trial design is that 2/3 of patients receive Cediranib and 1/3 receive placebo. Those on placebo with disease progression start taking Cediranib. Neither I nor my doctor know if I am taking...

Olga, Bonni, thank you very much for your support. Olga, yes, Sutent is the only option available in Russia for me now. But I try to take it later. If you have the link to the article about the second response to Votrient (after Sutent) could you please share it. Bonni, in my case the two factors yo...