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 Amber Santiago. Here is her GISTory:
Amber’s GISTory
Exactly one year ago, at the age of 39, my life was forever changed. I had been having pain, bloating, and gas on and off for about a year, but we knew something was just not right. I finally got a CT scan which revealed multiple masses throughout my abdomen and pelvis. To say I was shocked was an understatement. When I told my husband, James, we spent the next two days trying to process the reality of our situation. We cried, we researched, I made many phone calls, and we just held each other. We told our children, Savannah 21, and Alex 15, and extended family and friends. James spent the next weeks and months researching on my behalf and taking care of the house, and family, and business. My parents and sister were also there, by my side for every appointment and anything I needed. I was cared for so well… It took another month to receive the diagnosis of stage 4 GIST (exon 11).
Amber Santiago, Pennsylvania, USA
We found great care, and a world-renowned surgeon, at UPMC in Pittsburgh. After taking imatinib for the next 6 months, I finally had the big surgery. When people ask, it’s hard to even explain it all. Well…part of my stomach, spleen, omentum, small portion of the small intestine, gall bladder, appendix, and both ovaries were removed, leaving a huge incision from my sternum to my pelvis. It was a pretty big deal, but I am healing wonderfully and sleeping better than I have in years!!!! It’s hard to believe I am only four months out. My first post-op scan showed no visible evidence of disease, which I never thought would even be possible! Words can’t even say how grateful I am to be here at this moment.We do know that recurrence is a high probability, and I will be on imatinib for life, and this is my new normal. No matter what, I will continue to live each moment to the fullest, with joy, with grace, and with strength. James has always called me Cookie, and yeah, I’m one tough Cookie.
Coping with a GIST Diagnosis
I work hard every day to take care of my body in the best ways I can, through diet, exercise, supplements, rest, and having fun. I have adopted the idea that what I do today to take care of my health is a gift I give to my future self. While I struggle at times, I do allow myself to rest or cry or reach out to a friend for comfort or whatever I need. It’s ok that I’m not 100% everyday, but I don’t stay down. make sure to get myself back up again, and I look forward to doing that!
Her Advice for Fellow GISTers
Find good Doctors and Specialists for this disease. Advocate for yourself and prioritize what makes you happy. Take each day one at a time. There’s so much help and support out there for us. Find those things and ways to be grateful for every day.
Hobbies She Enjoys
Weightlifting (when I can), Stretching/yoga, Hikes and walks, meeting with friends, dancing and being silly, and watching movies with my family
Motto for Life
Today is a gift. That is why it is called the PRESENT.
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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