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What To Know About Soft Tissue Sarcoma In The Shoulder

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With Stage 4 Cancer, Louisville Woman Choosing 'hope' By Leading 'Race To Cure Sarcoma'

LOUISVILLE, Ky. (WDRB) -- "To always have hope no matter what comes up, you can either choose fear or hope, and I feel like hope is always the best option."

Alexis Carrico was diagnosed with stage 4 Alveolar soft part sarcoma in March 2019 at the age of 24. Three years later, she's leading an annual fundraiser, the Race to Cure Sarcoma, to support others dealing with daunting diagnoses.

A seemingly minor nuance, her right leg being a bit larger than her left, led Carrico to seeking a medical evaluation.

"It's my dominant leg," Carrico said. "I've been retired from competitive cheerleading for seven years, and I haven't worked out in a while and I do not deserve this giant thigh muscle."

A leg biopsy resulted in a cancer diagnosis, changing her life entirely.

Alexis Carrico underwent a surgery to remove an 18-centimeter tumor. (Photo courtesy of Alexis Carrico)

"When we got the news, we all got in a very tight group hug, the tightest hug I've ever felt in my life between family that I knew was going to be the family for the rest of my life," Cole Carrico, Alexis' husband, said.

"It's very common with Alveolar soft part sarcoma for it to metastasize to the brain, into the lungs," Alexis said.

Further scans revealed the cancer had spread to both of her lungs, but it didn't reach her brain.

There was one potential procedure Carrico hoped to avoid.

"I did not want to go through with an amputation at all, it was going to be a last resort option for me" Carrico said. "But it was on the table there for a moment, which was super scary."

Traditional chemotherapy wasn't an option for treatment, so Carrico went to Dana-Farber Cancer Institute in Boston. A Sarcoma specialist there estimated she'd have between 10 to 20 years left to live.

She then went to the National Institute of Health in Bethesda, Maryland and enrolled in a trial that kept her quality of life.

"For the first two years that kept me stable the whole way through, we never saw any shrinkage and we never saw any growth, just totally stable," Carrico said. "Eventually, we sort of took matters into our own hands."

Alexis Carrico and her family at the Big Four Bridge in downtown Louisville.

Sam Draut

As Carrico has dealt with her diagnosis, she's had family and friends supporting her throughout the journey.

"The love and support we're getting from people is so instrumental," Larry Browning, Carrico's father said. "It keeps us going everyday, it makes it worthwhile, it's just so rewarding to get that kind of support."

That love and support Carrico received, she is now spreading to others with Sarcoma.

"I feel like as someone who has been touched by Sarcoma, it's sort of my responsibility to use my voice to advocate for it and call awareness to it because there is such a limited pool of us that are here to do so," Carrico said.

Although she didn't know how the cancer would respond after an operation, Carrico underwent a surgery to remove an 18-centimeter tumor, which was wrapped around the femur bone.

An 18-centimemter tumor was removed from Alexis Carrico's leg. (Photo courtesy of Alexis Carrico)

"It was actually a miracle we were able to get clear margins, so super thankful for how that played out," Carrico said. 

She's cancer free in her leg, but she still receives treatment for nodules in her lungs every 21 days at Ohio State University. Her parents drive her to Columbus, picking her up at 5 a.M., which allows for her to sleep in the backseat on the journey to Ohio.

Sarcoma is a cancer of the connective tissue, making up just 1% of all adult cancer in the U.S. Each year, more than 16,000 people are diagnosed with one of the 100 types of sarcoma, according to the Sarcoma Foundation of America.

Alveolar soft part sarcoma (ASPS) comes from different types of soft tissue like muscle, fat or nerves, according to  the National Cancer Institute. It's one of the rarest sarcomas, making up only 0.2% to 1% of all soft tissue sarcomas. There are only around 80 cases diagnosed each year in the U.S.

Carrico became involved with the Race to Cure Sarcoma Louisville when Katie Wintergerst, a Sellersburg woman who was diagnosed with Stage 3 Synovial Sarcoma, told her about the event that sends proceeds to the Sarcoma Foundation of America.

Fearless for Lexie team at the Race to Cure Sarcoma in 2021. (Photo courtesy of Alexis Carrico)

After speaking at the annual 5K fundraiser last year, Carrico is serving on the planning committee for the Race to Cure Sarcoma Louisville this year. She plans to walk in the race and spend time with supporters who joined her team, "Fearless for Lexie."

"I know how needed the funding, the research and the awareness really is," Carrico said. "100% of donations go directly to Sarcoma funding research, so I feel like that's the best foundation to work with."

The Race to Cure Sarcoma Louisville is scheduled for Saturday, Aug. 27 at the Big Four Bridge. There will be a 5K timed run and one-mile walk. 

To register for the race or donate to the Sarcoma Foundation of America, click here.

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FDA Sets Date For Adaptimmune's Sarcoma Drug Verdict

The FDA is due to decide by 4th August whether to approve Adaptimmune's engineered T-cell therapy for advanced synovial sarcoma, afamitresgene autoleucel (afami-cel), after a priority review.

If the biologics license application (BLA) is approved, afami-cel will become the first engineered T-cell therapy for solid tumours and the first effective treatment option for advanced synovial sarcoma in more than a decade, according to the Anglo-American company.

Synovial sarcoma is a rare soft tissue sarcoma, one of around 50 that appear in fat, muscle, nerves, fibrous tissues, blood vessels, or deep skin tissues that can be hard to diagnose and treat. The cancer accounts for around 5% to 10% of all soft tissue sarcoma types with around 13,400 new cases in the US every year, mainly in people aged 30 or less. It tends to metastasise easily to other tissues and has a five-year survival rate of just 20% if diagnosed at an advanced stage.

In the pivotal SPEARHEAD-1 trial, afami-cel demonstrated an objective response rate (ORR) of around 39% among heavily pre-treated patients with advanced synovial sarcoma, along with a 17-month median overall survival (OS) that Adaptimmune says represents a "significant advance" in treatment for this patient population.

Typically, ORRs for second-line therapies have ranged between 14% and 18%, with an OS range of between nine and 12 months, but around 70% of patients who responded to afami-cel in the study are alive two years after treatment, according to the company.

First-line therapy for synovial sarcoma generally relies on anthracycline-based chemotherapy with or without ifosfamide, and the last drug approved for second-line therapy was GSK's kinase inhibitor Votrient (pazopanib) in 2012.

Eli Lilly's anti-PDGFR-α antibody drug Lartruvo (olaratumab) was granted accelerated approval in 2016 as an option for newly diagnosed patients with soft tissue sarcomas who could not be treated with chemo, but was pulled from the market in 2019 after it failed a post-marketing confirmatory study.

$400m franchise

Adaptimmune has estimated that MAGE-A4-targeted afami-cel and a companion cell therapy for synovial sarcoma and myxoid/round cell liposarcoma (MRCLS) called letetresgene autoleucel (lete-cel) collectively have the potential to make sales of around $400 million a year with upside if they expand into earlier lines of therapy and additional sarcoma types.

Lete cel is a NY-ESO-targeting therapy, partnered with GSK, that recently generated positive results in the pivotal IGNYTE-ESO as a third-line treatment, with full data due to be presented in the third quarter.

"The FDA's acceptance of the BLA submission brings us one step closer to redefining treatment for people with synovial sarcoma," commented Adrian Rawcliffe, Adaptimmune's chief executive,

"Our franchise has great potential and, if approved, we have the capabilities and the capital to launch afami-cel – the first engineered T-cell therapy on the market for a solid tumour cancer," he added.

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