Category: Patient & Care Partner Stories
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Patient Spotlight: Celeste Olinger Denver, Colorado, USA
We interviewed long-term ALK survivor, Celeste Olinger, about her somewhat unusual cancer journey, her life, and her new normal since her diagnosis that still keeps her grounded and allows her to thrive.
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Dana Querido
We interviewed patient and ALK Positive volunteer Dana Querido about her journey with ALK+ lung cancer and her active involvement with the ALKtALK Healing Arts, Death Cafe, and more.
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My Thoracentesis Experience
During the Thanksgiving holiday, over a liter of pleural fluid was withdrawn via needle from my right chest space. I had just finished my third cycle of Carboplatin, Pemetrexed, and Lorlatinib after almost ten years of TKIs alone. The fluid first became evident on a PET scan and was classified as moderate effusion. I didn’t…
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Amanda Bialack-Stewart
Amanda has been actively involved in ALK Positive, Inc. through creating and leading the Young ALKies Group. We interviewed her in Los Angeles, California about having been diagnosed right after giving birth to twins at the age of 36, how she manages to balance family, work, fun, and self-care as a patient.
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Rich Gopen
Rich Gopen is an ALK patient and one of our match donors for Lung Cancer Awareness Month (LCAM). We interviewed Rich about his journey with ALK+ lung cancer, what motivates him, and his hopes for the future.
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Matt & Stephanie McAvin
Matt and Stephanie Mcavin were recently featured in Genentech’s Biomarker Testing Campaign that was filmed during the ALK Summit in Nashville. We interviewed them about their story living with an ALK+ cancer diagnosis, juggling Matt’s diagnosis with caring for their family of three teenagers, and their advocacy in getting the word out on the importance…
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Patient Spotlight Marc Muskavitch Boston area, Massachusetts, USA
Marc Muskavitch is an ALK patient, Board member for ALK Positive, Inc., and one of the leading members of the ALK Positive Medical Committee. We interviewed him on his journey with ALK+ lung cancer so far, his work with the Medical Committee, and what most excites him about the future of ALK+ cancer treatments and…
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PATIENT SPOTLIGHT: Xavier Chen, Paris, France
1. Tell us a little about your background – personal and professional – and your journey with ALK+ lung cancer so far. I am a 61-year-old French citizen of Chinese origin, now living in Paris. Beforemy diagnosis, I was living in Chiangmai, a northern city of Thailand, in semi-retirement after a very fulfilling career successively…
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First two weeks on NVL-655 clinical trial: Field Research for the Clinical Trials Committee
I started on the Phase II NVL-655 trial on March 1st, 2024, at UC Davis’s Sacramento campus, a seventy-five-mile ride from my house. I had pre-registered with Dr. Jonathan Riess’s trial coordinator in December, sending records from my oncologist electronically, and answering a lot of questions. They wanted a record of my initial cancer, and…
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Dr. Sydney Barned
We interviewed Dr. Sydney Barned – a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in…
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Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania
When we decided to interview Summer Hall Farmen about her personal journey– we didn’t know we were in for a treat. When we decided to interview Summer Hall Farmen about […]
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Pediatric ALK Spotlight Interview with mother and caregiver Ashley Sitorius, Hampstead, North Carolina
We interviewed , mother and caregiver of 11-year-old Deliah, who was diagnosed with ALK-positive brain cancer when she was just 7. ALK can actually appear in many pediatric cancers as […]