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.
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.
Our Patient of the Month for May is Gonzalo Arroyo Ortega.
My GISTory
I was first diagnosed with GIST cancer in October of 2019. I had some abdominal pain, which was quite bearable and it came and went but I wanted to find out what was causing it. After a few misdiagnoses I went to see a urologist who asked me to take a TAC image (CAT scan) of the abdomen.
With that test came the diagnosis: a GIST tumor.
My first reaction was utter panic and fear. I had never heard of GIST, but the word tumor next to it made it terrifying all the same. I remember that evening asking my father who is a neurologist and he had never heard of such tumor. I also called a digestive tract doctor, and she had heard of it, but didn’t know much about it.
My wife and I immediately got moving to find the right specialists to inform me of my situation and to help fight it.
I very quickly got an appointment with Dr. Emilio De Vicente, who is probably the leading surgeon of the digestive system and abdomen. He requested a whole array of tests and quickly calmed me by informing me that the GIST tumor has a high survival rate and he would remove it and I would never hear about it again.
He removed a 10 cm tumor in my duodenum, and a few days later the pathology result came in. It was the most aggressive type, and I would need to take imatinib for three years. That was my first time really being hit hard by the illness.
Gonzalo & his wife Arantxa.
I began taking imatinib 400 mg / day under the supervision of Dr. Cesar Muñoz and had TAC tests (CAT scans) every three months. Everything went according to plan, and I was cancer free for those three years.
After that period had passed, I continued having TAC tests (CAT scans) every 3 months, and I was confident that I had left the disease behind me for good.
In December 2024 in one of those routine TAC tests (CAT scans), everything changed. They found three tumors in my liver.
I was in shock, but with the help of my wife, I got back up and started fighting again.
I changed my doctor since Dr. Muñoz had moved on to research duties and no longer had patients directly under his care. I found an excellent new doctor with a lot of experience in GIST tumors – Dr. Rosa Alvarez.
I am back on imatinib 400 mg/day for an indefinite period and since then I have had a successful ablation with microwaves of two of the three tumors.
The tumor remaining is not growing and it’s responding satisfactorily to the imatinib treatment.
I have TAC screenings (CAT scans) every three months.
My attitude is normally of optimism, but I can’t help thinking that the good news could change to bad news any day, since I am aware of the high percentages of imatinib-resistant tumors, but I have also grown closer to God since my second diagnosis, and that together with my the support of my family it’s what is keeping me strong.
Gonzalo, Arantxa and their daughters, Jimena and Sofia.
How I cope with GIST
I am coping well with GIST. Obviously, it was a real disappointment to find out that it had reappeared, but I am keeping strong and confident.
My advice to fellow GISTers
My advice to fellow GISTers would be to make sure that you find an oncologist who has ample experience in treating GIST, and that if it is up to you to take imatinib as long as possible.
Hobbies I enjoy
My main hobby is reading. Specifically, history, philosophy and religion. I have a strong faith in my Christian religion and since my new diagnosis I have found a lot of strength from it. Besides that, I like to spend all the possible time with my family.
My #GISTLife Motto
I don’t really have a motto or quote I live by, but I guess my way of seeing life would be, “Do the right thing and have faith.”
Learn more about the LRG Patient Registry!
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
