Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
Brittany has been accepted for enrollment into the ARQ-197 Phase 2 Clinical Trial at UCSF in San Francisco following screening scans, lab tests, and an initial consultation appointment with the UCSF lead ARQ197 Trial research doctor, Dr. Steven DuBois, this past week. Brittany began taking the oral 120 mg. pill on Wednesday, and she will take it twice a day. She will have weekly lab tests and follow-up appointments with Dr. DuBois at UCSF during the first month of the Trial, and then she will begin a once a month schedule of tests, evaluation, and consultation with Dr. DuBois. There are plans to increase the dosage of the medication to 360 mg. once the increase has been officially approved, but Brittany will have the option to remain at the 120 mg. dosage or to begin the higher dosage which will be offered as a new Trial. We are holding very tight to Hope that this promising new medication will prove to be very successful in shrinking/killing Brittany's multiple mets and in preventing the growth of any new mets. I will keep the Web site updated on Brittany's treatment experience and results, and am Hopeful that the other ASPS Community patients who are participating in this Trial will do the same so that we can all learn about anecdotal experiences and results of the ARQ197 treatment from the shared information.
With special caring thoughts and continued Hope,
Bonni

Dear ASPS Community Friends,
I was so Hoping to be able to share good news from Brittany's most recent ARQ-197 Clinical Trial status chest CT scan and results appointment which was this past Tuesday, December 16th at UCSF, but heartbreakingly and very discouragingly the scans showed concerning continued and increased growth of her lung mets, with the largest cluster of tumors having grown an alarming 28% from 2.8 to 3.6 centimeters during the past nearly three months of ARQ-197 treatment. Because of the devastating significant tumor growth which exceeds the Clinical Trial maximum 20% growth criteria, Brittany has now been taken off of the Trial and we will be exploring and moving forward as soon as possible with another systemic treatment to try to shrink/destroy her multiple tumors and to stabilize the frightening rapid progression of her disease. We will probably try to obtain treatment for her with either Sutent or Cediranib if she meets the eligiblity requirements. Since the Clinical Trial was only following the growth of Brittany's lung mets rather than all of her tumors ( which we feel is really a flawed process and an inaccurate and skewed reflection of the actual success or failure of the treatment), we will now need to schedule a brain and spinal MRI and an abdominal/pelvic MRI or CT to determine the status of Brittany's other tumors including her resected spinal tumor, Gamma Knifed brain tumors, and her pancreatic and abdominal wall tumors. Needless to say we are extremely discouraged and devastated by the failure of this treatment in which we had invested so much Hope, time, and money, but we will try to emotionally re-energize, renew our strength for this increasingly challenging battle with this insidious disease, and move forward with continued Hope in our hearts. I am so sorry to have to bring you this disheartening news especially during this beautiful Holiday season which should be so filled with special joy and Hope, but I wanted to provide updated information as soon as possible so that the anecdotal treatment results from Brittany's failed ARQ-197 experience is available for those of you who are following this treatment. We are in contact with another ASPS patient who has heartbreakingly also had unsuccessful ARQ-197 treatment results. Devastatingly, during his several months of treatment he developed several new tumors and had increased tumor growth, and has also now been taken off of the Trial. When we questioned the doctor about how many ASPS patients are participating in the ARQ-197 Trial and what the results have been thus far, he told us that nationwide there are 26 patients who have been enrolled, and one patient who has shown a successful response. While these results are not very encouraging or promising, we are very Hopeful that the ARQ-197 will be successful for all of the other patients who are still on the Trial, and those who may still choose to participate in it, and we are Hoping that those who are participating in it will keep this Forum updated on their treatment experience and results. In the meantime, please take care everyone, have a most beautiful and richly blessed Holiday season shared together with your dear families and friends, and may the New Year bring continued Hope, the finding of an effective systemic treatment and cure for this monstrous disease, and complete healing and renewed good health for all ASPS patients.
Reaching out with special caring thoughts, warm Holiday best wishes, and continued Hope,
Bonni Hess