Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Sorry it's been a while since I checked in, but I have been pretty ill from side effects with the trial drugs. I continue to suffer from moderate to severe nausea around the clock despite multiple anti-nausea meds. I ended up being hospitalized twice in March for 9 days each (first at MD Anderson th...

To answer your questions, my tumor was not tested for MSI prior to my trial or at any other time. I believe my miotic rate was either 7/10 or 8/10 on my primary path report, but I would have to look it up to be sure. I am also unsure of the correlation between a high level of MSI in a tumor and a hi...

It was actually performed on a recurrence in my abdomen located where my primary was originally located. Remember how I said that my primary tumor split during surgery to remove it? Although my surgeon swore that it split outside the abdominal cavity, the pattern of my recurrence is undeniably consi...

Also, I get this dosage every two weeks. The dosage has remained the same throughout the study except for the first month, I got the Mogamulizumab weekly at the same dosage instead of biweekly.

Debbie-

Yes, I have been on the meds for a little over 7 months now. I am on 1mg/kg of the Mogamulizumab and on 10mg/kg of the MEDI4736.

Rachel

This combination is not so surprising, as there are currently a number of clinical trials combining immunotherapy drugs and TKI drugs for kidney cancer patients with success. Also, I'd say your friend's results look like a classic pseudoprogression followed by a response to the PD-1 therapy combined...

I hope everyone had a wonderful holiday! I am sorry that I haven't updated my post in a while. I just wanted to post a quick update to let everyone know that my 6 month scans in early December showed that my target tumors had shrunk another 14% for a total shrinkage of 56% since I started the study ...

It seems like this study is indicating that there is a problem with false negatives, not false positives. Accordingly, a positive PD-L1 expression test is still useful. Unfortunately, with a biopsy, there is always a chance of missing the portion of the sample with the cells that you are looking for...

I know of someone who was able to have IV CT contrast despite prior allergic reactions by taking steroids and benedryl prior to the scans. Just FYI in case the need every comes up when you absolutely have to use IV CT contrast in the future. Obviously, this is something you would have to discuss wit...

Bonni- I agree that it is important to do tissue testing if at all possible to narrow down treatment options. Unfortunately, ASPS, due to being a translocation-based sarcoma often does not have many targetable mutations. I have done both Foundation One genetic testing and genetic tumor testing using...

Hi Debbie, Here is the link to the two studies the other ladies from Canada are participating in: https://www.clinicaltrials.gov/ct2/show/NCT02261220?term=MEDI4736&cntry1=NA%3AUS&rank=13 https://www.clinicaltrials.gov/ct2/show/study/NCT01693562?term=MEDI4736&cntry1=NA%3AUS&rank=7&...

Olga, I will try to answer all of your questions. With regard to the primary tumors being resected, I know for sure that my primary was resected and the primary tumor of the patient on the MEDI4736 plus tremeluminab (with 30% tumor shrinkage) was also resected. I am not sure about the 3rd patient. N...

To answer your question as to why we do not post here in addition to Facebook, we are a very new group that just formed from a few ASPS patients who kept in contact regularly from the larger Sarcoma Alliance board on Facebook. I will share a link to this forum on the Facebook group wall and encourag...

I run an ASPS Facebook group and wanted to chime in on this topic and let you know that we have in fact had 3 success stories with PD-L1 therapy in our group alone, myself included. All three of the success stories include the PD-L1 inhibitor MEDI4736 as part of various clinical trials. The first AS...