Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello Olga, Interesting questions. First I'm not the doctor they are and we are learning on the job so to speak. I would have to assume if there are no new activities then the med must be working and that to me is reason enough to have continued. Unfortunately, as I mentioned in an earlier statement...

Debbie, It is my understanding it is seen through creatinine levels. After the AXI/Prembro trial in Miami Pam has said NO more biopsies, she has had enough. I also assume the levels are being monitored for kidney health. Pam's creatinine level has stayed slightly elevated on Anlotinib but not by much.

There is no direct test on tumors in this trial but EGFR is checked on each blood draw along with blood sugar.

Thanks, Debbie, yes her calcium levels are checked at least every 30 days or more. Gotcha on the step up, we shall see. I'll let you know how things turn out. Appreciate the links.

Hi Debbie, The liver tumors have not changed since 2017. Her migraines have finally been controlled with the Propranolol and Topamax she stopped taking the Nortriptyline about 3 months ago as it caused her to have acid reflux and meds to control that did not work, fortunately, she has not had a migr...

Hello Debbie, good to hear from ya. Pam will start cycle 37 tomorrow (Sept 9) with the Anlotinib. She has had a lot of nausea and her appetite has not been good lately. I think if it were not for all the damage that has been done to her spine she would be doing better. That said, as Olga has stated ...

Pam began the Anlotinib trial on August 16, 2017, with a dosage of 12mg for 14 days and then off 7 which is a cycle. The side effects for Pam have been a lot of nausea and vomiting and loss of appetite. Pam started have many migraines and was taking Topamax and Imitrex, but they continued to get wor...

Pam was taken off the Keytruda trial on 3/06/17 due to an increase in her liver mets. She was then started on Nivolumab and Ipilimumab on 4/12/17 but this combination caused her to have colitis and was taken off of that treatment. She began the Anlotinib trial on August 16, 2017.

Hello Nhi, I'm so sorry to read about your bone mets. My wife Pam was in the Axitinib plus Pembrolizumab study in Miami with Dr. Wilky from June 2016 until March 2017. Pam had numerous bone mets throughout her spine and other parts of her body. Pam had to leave the trial due to her liver mets increa...

My name is Karl, my wife Pam was diagnosed with ASPS in November 2011 and is currently in the Clinical Trial NCT 02636725 in Miami with Axitinib and Pembrolizumab. Pam was first diagnosed with breast cancer, Invasive Mammary Carcinoma, which was removed with good margins in September 2011. One of he...

Hi Debbie, So sorry to hear about Joshua but I'm glad he is having some success with Opdivo. Pam had no other experiences with sarcoma. Pam was first diagnosed with breast cancer, Invasive Mammary Carcinoma, which was removed with good margins in September 2011. One of her scans showed she had cysts...

Hello Olga, My name is Karl, my wife Pam was diagnosed with ASPS in November 2011 and is currently in the Clinical Trial NCT 02636725 in Miami. We are from Louisiana and Pam is currently 65 years old. Without going through Pam's timeline of events prior to going to Miami, we wanted to share what is ...