Treatments for Synovial Sarcoma typically include Chemotherapy, Radiation, Surgery and Clinical Trials. The profiles below were provided voluntarily by members of our Synovial Sarcoma Families Face Book Page to help bring awareness

Seth Quinn - Ventura, CA 21 y/o

Diagnosed with Synovial Sarcoma in his left knee November 2020. He was originally diagnosed with a vascular malformation 3 years earlier and underwent 2 embolizations in 2018. Seth was part of a radiation clinical trial and underwent 5 days radiation using 6 rems per day for a total of 30 rems of radiation at UCLA Medical Center, followed by surgery in December 2020 by Dr. Nicholas Bernthal to remove the 3.2cm tumor with clear margins. In December 2021 Seth had surgery by Dr. Jane Yanagawa to remove a 9mm lung nodule with clear margins. He then underwent 6 rounds of AIM chemo which shrunk the remaining nodules, but 3 months after surgery the nodules began to grow. He is now trying Votrient, a targeted therapy, to try to stabilize the tumor growth. At his 2 month scan the tumors showed growth, so Seth began the C4 Therapy clinical trial at the City of Hope under the care of Dr. Mark Agulnik on March 31, 2023. So far Seth has only experienced a bit of dehydration from the drug and not other side effects. Seth attends college at Cal Poly in San Luis Obispo, CA. He studies philosophy and is an avid surfer. You can learn more about Seth and his experience at www.FollowingSeth.com.

Joey Toro - San Antonio, TX

Diagnosed in 2018 with Synovial Sarcoma following several years of sporadic pain in his hip and abdomen, which was originally attributed to old football injuries and constipation. Even after an being admitted to the ER while attending the police academy and receiving an x-ray, the hospital missed the large Synovial Sarcoma tumor pressed against his colon. As the pain intensified San Antonio Texas Med Clinic discovered a "cantaloupe size" via MRI in his abdomen. Dr. Dennis Rousseau from Surgical Oncologist of South Texas successfully removed the tumor 2018. His 1st reoccurrence during the summer of 2020 in the lungs which were all removed by the team from Surgical Oncologist of South Texas. Joey had a 2nd reoccurrence in 2021 near his spleen while being seen by the medical Staff at MD Anderson, but due to some technical and clerical errors I went back to my original team in San Antonio to get that tumor removed. His 3rd occurrence happened in 2022 where we had another metastasis in my lung and was treated with Chemotherapy and Radiation at MD Anderson, which helped reduce tumor size. I recently went for another PET scan and discovered I had 6 more metastasis in my chest cavity and I’m currently trying to get enrolled in the Prame Car Tcell clinical therapy trial.

Beth Primm - Huntsville, TX - 52 y/o

Diagnosed with Synovial Sarcoma in December, 2016 after a 10.cm tumor was found in her pelvic wall during a routine obgyn appointment. Thinking it was a fibroid, surgery was performed to remove it. Upon opening her up, the doctor realized it was more than just a fibroid, took a biopsy, and sewed her back up, leaving the tumor in her and possibly saving her life. The tumor was surrounding her femoral artery and major nerve to the right leg. She was referred to MD Anderson where is was determined to be Synovial Sarcoma. Over the next 5-mos she completed 6 rounds of AIM before undergoing a 9-hr surgery to remove the tumor in July 2017 with clear margins (R0). Beth had to relearn to use her right leg again, but after a year of physical therapy, she is able to walk normally. She remained NED for 20-mos until April 2019 when a spot was discovered in her right lung via a follow up CT scan. A biopsy was performed and thoracotomy scheduled via a wedge resection in July 2019. She was NED for 10-mos until March 2020 when a mass was discovered in her spine. She completed 1 episode of stereotactic radiation therapy which killed the tumor. In January 2021 a mass was discovered in her abdominal wall and several in her left lung. She entered the Adaptimune Spearhead TCell trial. Her cells were extracted in April 2021, engineered, and reinserted in June 2021. As of April 2023 the tumors in her lungs have disappeared and the one in her abdominal wall continues to shrink. Overall, the tumors have been reduced by 74% and continue to slowly shrink. She visits MD Anderson for follow-up every 2 months. Her Oncologist is Dr. Conley

Lisa Brown - Arizona - AZ - 48 y/o

Diagnosed in August 2021 after having a small cough she contributed to 'summer allergies.' Her family doctor listened to her lungs and said, “I don’t hear anything”. But Lisa had what she refers to as a 'devine intuition' and requested an X-Ray. The X-Ray spotted a mass and she was rushed to a CT Scan, which revealed an 8 cm mass in the right middle lobe of my lung. A biopsy confirmed it to be Synovial Sarcoma. In Sept 2021, the right middle lung lobe was resected and a 10 cm mass was removed with clean margins. From Dec 2021 through March 2022, Lisa completed AIM Chemo Therapy (4 rounds AIM every 3 weeks). In Sept 2022, 4 small wedge resections of the right upper and lower lung lobes, plus lesion removed from the pericardium and the diaphragm. From Nov 2022 though 2023, Votrient was started but stopped due to toxic liver levels. In Jan 2023, a CT scan show 3 spots on the pancreas. Confirmed with a biopsy to be Synovial Sarcoma. Cancer Hospitals were conflicted on what to do: Mayo Clinic Phoenix said "pancreas surgery it would be a “morbid surgery” and would not operate. MD Anderson Houston oncology panel said it was "inoperable" and "do more chemo be placed on hospice" when it returns. Memorial Sloan Kettering Cancer Center in NYC said it was 'inoperable'. Stanford Medicine Oncology said it was 'inoperable". Lisa spoke to more than 5 doctors before finding, Dr. George Poultsides via PubMed who has performed the Whipple Procedure on another Synovial Sarcoma patient. He and his team of doctors completed the Whipple procedure on the pancreas and took 2 small lesions off the pericardium which were confirmed to be Synovial Sarcoma.

In April 2023 a follow-up CT scan showed 4 small spots in her right upper and lower lobes, one of which is over 1 cm qualifying her for the IMC-F106, PRAME x CD3 ImmTac clinical trial. Lisa started the trial at The Angeles Clinic , Dr Omid Hamid, which includes weekly infusions and CT scans every 9 weeks.

Lisa continues to hike, walk over 5 miles, and kayak every chance she has and living a full life and attributes this to her determination and faith! Lisa suggests always getting 2nd, 3rd, 4th opinions!