Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Cindy,
Thank you for your thoughtful response to my questions and for so graciously sharing the information regarding the schedule for your son's Clinical Trial visits, scans, and the side effects that he experiences from his ARQ-197 medication. I am so grateful that he doesn't seem to have any noticeable side effects other than some possible fatigue, which Brittany also experienced during her two months of ARQ-197 treatment. My most positive thoughts and very best wishes will be with your son and your family for continued good news of stable disease from his upcoming April status scans, and I will be anxiously awaiting your next update. In the meantime, please take care and enjoy a most happy and beautiful Springtime.
With deepest appreciation for your sharing and with special caring thoughts and continued Hope,
Bonni

Hello fellow ASPS family members,
I just wanted to post an update on my son who has been taking the clinical drug ARQ since march 2009 with no new mets. However, one met is not being a team player and has grown slightly so we may need to treat this spot with some other treatment but we are not sure what yet. Sam feels good and has no real side effects from the med which has been such a blessing as he was able to finish high school. Best wishes to all who are on this roller coaster.

New article is published online before print February 18, 2014, doi: 10.1200/JCO.2013.48.7462 JCO February 18, 2014 JCO.2013.48.7462
"Extended Progression-Free Survival in Two Patients With Alveolar Soft Part Sarcoma Exposed to Tivantinib" (Tivantinib is a new name for ARQ 197)

Extended Progression-Free Survival in Two Patients With Alveolar Soft Part
Sarcoma Exposed to Tivantinib Introduction Alveolar soft part sarcoma (ASPS)
is a rare malignancy that tends to strike young adults and adolescents. It
has an unusual clinical behavior; it is somewhat indolent, with slow
progression, and yet is incurable once metastasized. Patients with ASPS
often present with extensive metastatic disease, frequently involving the
lungs and sometimes the brain.1-2 On the basis of functional data linking
the characteristic translocation found in ASPS, ASPL-TFE3, to upregulation
of expression of the MET receptor tyrosine kinase,3,4 we proposed to conduct
a clinical trial of tivantinib, an orally available, selective inhibitor of
MET, for patients with ASPS and other cancers with expression of MET. This
was a phase II study with response as the primary outcome (A Phase II Study
ofARQ197 in Patients With Microphthalmia Transcription Factor Associated
Tumors).
the full text is available here:
http://jco.ascopubs.org/content/early/2 ... html?ct=ct

Hello Cindy
I am so happy hearing he is doing so well!!!

Big hugs to you both!
Its so nice to see posts here from you