I was diagnosed with paraganglioma with an SDHB mutation in May 2022, at 25 years old. After several ER visits for what I thought was a kidney infection, a CT scan finally revealed a softball-sized tumor in my retroperitoneum. I had surgery in October 2022, followed by an unexpected three-week hospital stay. My doctors believed they had removed everything, and I was cleared at my six-month follow-up.
But at my one-year scan, the cancer had returned aggressively. It had spread to multiple areas, including my lungs, liver, and abdomen. I began infusion radiation treatment in February 2024, but it wasn’t effective. Surgery was no longer an option. In January 2025, I was hospitalized with a pulmonary embolism and started chemotherapy. I completed five months of infusions and recently transitioned to oral chemo, which just received FDA approval for my type of cancer. The goal now is life prolongation and maintaining the best quality of life possible.
Ashlyn’s LifeList:
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A trip