One of the two main missions of Austen's Army Foundation is to promote awareness of rhabdomyosarcoma (rhabdo.) Not only are people unaware this disease exists, but even if they have heard the name, they may not understand the intricacies. It has multiple subtypes and tumors can occur in a variety of locations.
Therefore, we are launching the This is Rhabdo campaign, where we will feature the stories of rhabdomyosarcoma patients so the public can understand a bit more about this disease.
We are kicking off by highlighting Annie H. Please read her story below, share it and help our mission of getting the word out about rhabdomyosarcoma.
Annie was a freshman in college, who enjoyed listening to music and going to concerts, when she was diagnosed with Alveolar Rhabdomyosarcoma of her left forearm. “The diagnosis was shocking, terrifying and very hard to process. It was surreal. I was suddenly in a fight for my life,” she said. Alveolar is the more aggressive form of rhabdomyosarcoma and has a higher mortality rate. Annie is also positive for PAX3-FOX01, which is a gene mutation linked to the alveolar subtype.
Annie’s intensive treatment plan consisted of 14 cycles of chemotherapy to target the cancer in her arm as well as the microscopic metastasis throughout her body, surgery to remove the tumor and 28 high-dose radiation treatments. “The treatment year was brutal. I was sick and bedridden most of the time. I experienced extreme nausea and vomiting, neuropathy, mucositis, bone pain, radiation burns and open wounds, as well as anxiety and depression from the isolation and fear,” she recalled.
Additionally, the chemotherapy drugs used left Annie infertile. She is in the early stages of menopause and will require hormone replacement therapy going forward. The three main drugs that made up the backbone of her protocol are between 40 and 68 years old. These drugs each have a lengthy list of short- and long-term side effects.
Though there has been no evidence of disease in the last 14 months since she ended treatment, “The journey does not end after treatment,” she said. The last year has had its own set of challenges both physically and emotionally. She still has some symptoms of neuropathy and lymphedema. She also works with a therapist weekly to help her process the ongoing fear and anxiety related to her experience and the uncertainty of her future. She will also require scans (MRI, CT) every three months to monitor for relapse.
Annie is currently continuing with classes at Georgia State and has spent a lot of time over the past year volunteering at Children’s Healthcare of Atlanta through the College Volunteer Program. “I enjoy using my experiences to be an advocate and using my voice for raising awareness for the critical need for more research funding for childhood cancer.”
It is Annie’s wish to see more of the Federal government's overall cancer funding go to childhood cancer, specifically rhabdomyosarcoma. “Childhood cancer gets less than 4 percent of the Federal government’s cancer budget. Since there are two main subtypes of rhabdomyosarcoma, which behave differently clinically, it is not just one disease. Imagine how little of the current funding gets allocated to rhabdomyosarcoma, which is considered a rare cancer, making up about 3 percent of all childhood cancers.”