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 February is Helbert Salas. Here is his GISTory:
Helbert’s GISTory
Helbert Salas and his wife, Daniela Rodriguez, Costa Rica
In 2007, when I was 17 years old, I went to the hospital due to stomach bleeding. After a couple of gastroscopies, a small tumor was found which, at the time, was thought to be benign. Later that year, I had a biopsy, and it was confirmed to be a GIST, but was still considered benign.
In 2008, I had surgery to remove it which went well, but since I did not know it was cancerous, I did not remain under medical control.
In 2017, I had a routine medical exam, and three tumors were discovered on my liver. I had some CT-scans and MRIs for the new tumors but, since GIST is not a common condition, the doctors did not think it was related to my GIST, so they did not do any biopsy and only watched the tumors grow. I did not have any symptoms, so I did not care much back then.
In 2020, I had a biopsy done which was suggested by a gastroenterologist. When they received the results, they informed me the biopsy came back as positive for GIST from the metastatic tumors I got back in 2007. I started taking Imatinib 400 mg, and a year later 800 mg. Right now, I’m still on 800 mg.
In 2023, I had a mutational biopsy which revealed my GISTs are SDH deficient.
Coping with a GIST Diagnosis
At first, I was shocked. I mean, realizing you have cancer when it’s at stage 4 is very strange. It affected me during the first months, but my wife, Daniela, has always supported me. Also, she has arthritis, so we have to support each other and that has helped me face the difficult times. Right now, I am taking my cancer in a pretty good way. I have a sensor humor that is a bit twisted, so I joke and laugh about it all the time. You know, apart from the occasional diarrhea, nausea, and vomiting, I live a very normal life.
His Advice for Fellow GISTers
I guess staying positive is something I would always suggest. Talking about your situation with others is always helpful. Putting things into perspective can be very useful. Sometimes we can think we are much worse than we really are.
Hobbies He Enjoys
I like singing, listening to music, playing video games, watching anime, and watching series/movies.
Motto for Life
“Try not to worry about what hasn’t happened.”
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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