In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Patient of the Month for October is Sandra Cipriani. Here is her GISTory:
Sandra’s GISTory
Dave and Sandra Cipriani, Colorado
“Did you try a TUMS?”
That was the doctor’s first question in June 2025 when, at age 53, I walked into an ER for the very first time in my life. I felt dismissed for a moment, wondering if my severe abdominal cramps were really that serious. A CT scan quickly revealed otherwise: a 4–5 cm mass in my stomach which the doctor thought was a dieulafoy lesion – something he hadn’t seen in his 25 years in the department.
An endoscopy soon after uncovered an ulcer and internal bleeding, but the biopsy results were the real shock — a gastrointestinal stromal tumor (GIST). I got the call while sitting at my kitchen table and hearing the word cancer was devastating. Until that moment, I had always considered myself healthy, active, and thriving.
Like many, I turned to ‘Dr. Google’, which led me to The Life Raft Group. Within hours of registering, I received an email from Carolyn Dewalt that gave me both clarity and comfort — I wasn’t alone, and I now had direction to the GIST specialists at the University of Colorado in Denver.
The next day, my husband secured an appointment at their multidisciplinary clinic. The verdict: a localized stomach GIST with a PDGFRA Exon 18 mutation, and surgery was the best path forward. Waiting two months for that surgery felt like forever, but in August I had a successful resection.
Today, I’m several weeks into recovery, my eight incisions are healing well, I’m slowly returning to normal foods, and I’m on track to return to work.
Coping with a GIST Diagnosis
Just a few days ago, I listened to Anne Lamott’s Dusk, Night, Dawn, where she writes about taking the next step even in the hardest moments and. “we look up and around for brighter ribbons.” That’s how I try to cope with GIST — searching for brighter ribbons, big or small. For me, that means educating myself. I’ve learned about the groundbreaking work that led to the imatinib medication 25 years ago, the difference between localized and metastatic GISTs, and the critical role of mutations. At first, discovering that my PDGFRA mutation was resistant to imatinib felt like the ground dropped out beneath me. But then I learned two hopeful facts: this mutation tends to be slow-growing, and there’s already a targeted therapy, avapritinib, approved just a few years ago. That knowledge turned despair into reassurance.
Coping with GIST is truly an emotional and physical roller coaster. The key for me is not to let it control me, but to take action. As the saying goes, “There’s nothing to it but to do it.” And alongside the challenges, there’s gratitude — for The Life Raft Group, for the doctors and nurses dedicating their careers to this rare disease, for my husband who has been my rock, and for those incredible friends who support us at every turn: those who check in regularly, watch our dog, help in the hospital, or drop everything when listening or action is needed. In the midst of the unknown, I’ve discovered countless moments of humility, perspective, and beauty.
Her Advice for Fellow GISTers
As a relatively new member of the GIST community, I feel humbled by those who have been navigating this journey for many years. The stories I’ve heard through GIST Chat and Patient of the Month features inspire me daily, and the support is truly unmatched. Here are a few lessons I’d like to share:
- Listen to your body. You know when something isn’t right — whether it’s pain that doesn’t feel like food poisoning, a stomach bug, or sore abs. Don’t ignore it. Get it checked.
- Connect with others. Finding someone with a similar profile can be a lifeline. I was fortunate when a GISTer from Florida reached out after I posted in the chat. She had just gone through surgery and helped me understand what localized GIST might mean for me. Later, Antoinette Pauwels from LRG connected me with another GIST-sister in Texas who shares my rare mutation. These connections gave me hope when I needed it most and still allow us to compare experiences across states.
- Live in the present. With cancer, there’s always waiting — for the next appointment, scan, or test result. But life happens in between. My new motto is: “Every day, every hour, every minute, every second.” This diagnosis is a powerful reminder not to procrastinate joy. As Tom Malone (August’s Patient of the Month) said so beautifully, we should all strive to live each day fully.
Sandra and her dog Honey
Hobbies She Enjoys
Right now, recovery means slow walks with my sweet German Shepherd rescue, Honey, along the beautiful trails of Colorado — a daily highlight for both of us. When I’m back to full speed, I love being active: swimming, lifting weights, paddle boarding, and practicing recurve archery.
Outside of fitness, one of my favorite joys is traveling with my husband, Dave, to tennis tournaments —combining our love of the sport with exploring new places. And wherever we go, we make sure to check out new restaurants together, because good food and good company are the perfect pairing.
#GISTLife Motto
Over the past year, I’ve collected a few quotes that keep me grounded and motivated through my GIST journey. I remind myself to “look up and around for brighter ribbons” even in difficult moments, and that “there is nothing to it but to do it” when action is needed. I carry the mindset that “we can do hard things” and live by “every day, every hour, every minute, every second”, embracing each moment fully.
Other reminders keep me connected to my body and mind: “listen to your body”, “mind over matter”, and “you have been training for this your whole life”. And when challenges arise, I simply tell myself to “kick it to the curb” — letting go of fear and moving forward with hope and determination.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
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