Rad30 from UK

[Rad30]

I'm not really sure how to start this but here it goes. I was diagnosed with metastatic (lungs) ASPS in jan '13 which developed in my left upper thigh. The tumour was removed surgically but staging ct scan showed spread to the lungs. I'm currently taking part in a clinical trial (in uk where I live) that is testing a drug called crizotinib. I entered the trial in jan this year. After 15 back to back cycles of this oral chemo drug, my oncologist has confirmed that this drug has stopped the progression of the disease. I've had no progression (spread or growth) since I've started this drug!! I'm unsure of its availability to others but more people should be made aware of this drug.

[Olga]

Hi, welcome to the forum. Do you want to pick the screen name so we would rename your tread so it will stay open just for your updates in the future? It is good to hear that you are stable on crizotinib for 10 months now. We discussed this drug awhile ago here
http://www.cureasps.org/forum/viewtopic.php?f=21&t=749
Since then we even had some of our patients taking this drug off label as it was approved for other diseases (lung cancer etc.), but with the limited success - probably because the biomarker is found to be significantly expressed in some patients and moderately in other? We do not know. May be the stage of the disease - small lung mets versus big ones or other mets locations - plays its role too. Anyways, it is very good to hear about your response and please keep us posted how the trial goes and its side effects. I will open a crizotinib clinical trial topic in the Clinical trials area.

[Bonni Hess]

Dear Rad30,
Welcome to the CureASPS Discussion Board and thank you for reaching out to share your ASPS information on this forum. I am so sorry for your ASPS diagnosis but am grateful that you are having a successful response to your Critzotinib treatment thus far which is very encouraging for everyone following this promising new drug. I Hope that you will have continued stabilization of your disease and that you will continue to participate on the Discussion Board and share your updated information because shared anecdotal treatment information is truly one of our strongest weapons in fighting this extremely rare and very challenging disease.
Stay pro-active and strong in your battle, let Hope lead you through each day, take care, and keep in touch as you are able.
With special caring thoughts, healing wishes, and continued Hope,
Bonni Hess, mother of 32 year old Brittany diagnosed in July 2001 at age 19