Cure Alveolar Soft Part Sarcoma International (iCureASPS)

ARQ 197 is an oral drug in the family of targeted therapies (c-met inhibitor). The clinical trial for ASPS was opened in November 2007. If you are a patient on that clinical trial, please use this forum to report your personal experience with ARQ 197. If you are an ASPS looking for more information about that trial please post your questions here.

Best Wishes,
Yosef

Greetings ASPS community,
This is Karen Imm. I just wanted to make you aware that I have started the ARQ 197 trial. I am working with Dr. Wagner at Dana Farber. I have been taking the drug for about 10 days so far. No serious side effects. (While in Boston, I fell and broke my kneecap for the 5th time and my purse was stolen, so maybe I was just distracted from any side effects )
I currently have a 3 cm tumor they are watching along with several other lung mets. So, I will keep you all informed on how things progress.
Keep the faith,
Karen Imm

Thanks for sharing this, Karen. We are interested in the possibility of a trial of an oral c-met drug, but our daughter is only 11, and we're not sure if a company will give this to us.

How much monitoring is required for the ARQ197 trial? Blood draws, scans etc.

And are there any side effects as far as you're concerned?

Thanks for any info, 'F'

Hi 'F',
I hope this finds you doing well. The ARQ 197 trial has been going well so far. I stared taking the drug on Feb. 12th and so far there are really no side effects. Occasionally there is a touch of nausea, but nothing serious. I am able to keep my regular work schedule and keep up with family activities.
The trial requires an initial visit for staging. That includes a PET scan, CT scan, blood work, UA, and a visit with the doctor. Then you have to go back once a week for the first month. So, you have a total of 5 weekly visits. The second visit also includes another PET scan, along with more blood work and a UA (and doctor's visit). Visits 3,4 and 5 are all just blood work, UA (and doctor's visit). After you get through the first month, you only have to return once a month. The drug is a pill that you take twice a day and they are kind of particular regarding when and how you take it. You are scanned every two months after the initial staging to see if the drug is effective. My scan will be April 7th, so I will certainly keep you informed. The staff at DFCI has been wonderful. They really work to help you make the visits as easily as possible. We have been very happy with everything so far.
Please let me know if you decide to start the trial. I would be glad to provide information or help in anyway that I can.
I hope you have a blessed day,
Karen Imm

Dear Karen,
I Hope that this finds you doing and feeling well and having received good results from your April 7th scan. Prayerfully the ARQ-197 has been very successful in destroying or shrinking your mets, or at least in stabilizing the progression of the disease. I know of three other ASPS Community members from this Web site who are currently, or are planning to be, participating in the ARQ-197 Clinical Trial , two at Dana Farber and one in California. I am Hopeful that they will also keep this Forum updated about their ARQ-197 experience and the outcome of their treatment. This shared anecdotal information is so vitally important to all of us in this very challenging shared battle. l am anxious for your next update which will prayerfully bring good news of a very successful response to the treatment. In the meantime, please take care, keep in touch as your time and situation allow, and know that I am holding you very close in my heart, my thoughts, and my prayers.
With best wishes, special caring thoughts, and continued Hope,
Bonni Hess