Pam from Louisiana - Dx Nov 2011

[khp]

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 her scans showed she had cysts on her liver and our radiation oncologist wanted a closer look before he started treatment on her breast. The scan showed that they were cysts but it also showed something behind her liver. After several biopsies that let them know it was cancer but not what kind, Pam had surgery to remove the tumor. The ASPS tumor was attached to her spine and aorta and of course they were not able to get margin on her spine but managed to on her aorta which was negative. Pam then received radiation to the area where the mass was and had CT scans every 6 months until December 2013 when her liver was shown with a tumor. We had a Pet/CT scan done at that time which showed not only was there a tumor in her liver but also her C2,C7,T1 vertebrae and other bones. After having radiation to those areas we were sent to MD Anderson Sarcoma unit in Houston. Pam went through all the necessary tests to get into a trial with Sutent or Cediranib but at the last minute AstraZeneca decided due to Pam having breast cancer two years earlier they didn't want to take a chance that it would reoccur and tilt the trial results. At that time our Oncologist put Pam on Sutent in April 2014 along with Xgeva injections monthly. This lasted until September 8th 2014 when she was switched to Votrient due to the bad side effects of Sutent. Pam stayed on Votrient until July 2015 when her tumors began increasing. We were during this time looking for a trial to hopefully come along as tumors had started showing up in other parts of her spine, ribs, liver and her lungs. I had been watching the web sight clinicaltrials.gov for sometime when I saw Dr. Wilky's trial had started recruiting and that is how we ended up in Miami. I have posted Pam's scan result under the link “Axitinib and Pembrolizumab (Keytruda) in Miami”.

[Ivan]

Hi Karl welcome to the forums. I'm sure that once everyone is back from the holidays, they will chime in with some words of advice!

[Olga]

Karl,
thank you so much for posting your wife story and for letting us know about her experience on the trial. Here is the link for the people to find it:
http://www.cureasps.org/forum/viewtopic.php?f=84&t=1322

Her story is highly unusual - we do not have any patient even close to that age, most of them are in the 15-40 years group with just a few younger kids. It is very probably that Pam had it for a very long time and her ASPS was very slow growing to this stage for like 20-30 years. However we have the patients with the primary in the same location - inside part of the retro-peritoneal space close or attached to the spine - and it is a very challenging location to remove it completely without affecting the patient's quality of life. Often this surgery is even denied at first based on the QOL issues and our patients often had to fight to get it surgically removed.

[D.ap]

Pam on Keytruda and axitinib
https://cureasps.org/forum/viewtopic.php?p=10104#p10104