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 March is Rob Taylor. Here is his GISTory:
Rob’s GISTory
Rob Taylor, Illinois
In 2016, while pursuing a referral from my doctor for a routine colonoscopy, she examined me, felt something in my stomach and ordered a CT scan. The evening after my scan, I felt a severe pain in my stomach, passed out and was sent to the hospital. The next day, I was told that I had a large mass in my stomach that needed to be removed.
A couple of days later a surgeon with fingers as wide as a roll of quarters operated on me and said that he could not remove the entire mass. He told me I had a GIST tumor. The doctors were not giving me a straight story – they did not inform me that GIST was cancer.
I was told by the surgeon that there was nothing more that he could do, and he referred me to another surgeon for a Whipple procedure. This surgeon also could not remove the rest of the tumor. I was told that there was nothing more that he could do and to go see an oncologist.
The oncologist informed me that she was not familiar with GIST but would do her best. She referred me to the Director of Sarcoma at a university hospital for advice. I was getting CTs, MRIs and PET scans. My last surgeon and the two oncologists could not agree if the tumor was growing or not; at each visit I was getting a different story. My anxiety and hopes were like a Yo-Yo. I told my primary oncologist that I need some ‘looney’ pills because the ups and downs were driving me nuts. I couldn’t stomach the pills, so she suggested that I join a support group. I immediately knew that it was not happening because I thought that it was not the manly thing to do.
About a 8 months after the 2nd surgery, I found The Life Raft Group online and was impressed. I signed up and started going to the meetings. The people that I met at the meetings were friendly, encouraged me and gave me hope. The information shared gave me a workable knowledge of each mutation and I was informed that I needed to get mutational testing. When my mutation report came back it conveyed that I had no known mutation and considered “wildtype”.
The university oncologist shared with me that I had a 90 percent chance of living only 6-9 months and that he did not see a need for additional testing. At that point, I was on 800mg of imatinib and had many bouts of internal bleeding.
In 2018, I had the great opportunity to attend ASCO to assist at The Life Raft Group booth (something I will never forget!). I was fortunate enough to meet some of the LRG team – Sara Rothschild and Laura Occhiuzzi. I was very impressed with how hard they were working to advocate for us GISTers. They took time to talk to me and put me on the right path. I learned more about advocating for myself, finding a GIST Specialist and getting mutational testing. I could tell that they genuinely cared and were committed to help me. They introduced me to one of the leading oncologists in the country and helped me to get an appointment with him in Miami, Florida. This GIST specialist put my tumor sample through additional testing. The tests indicated a variant of unknown significance in NF-1.
My LRG state leader, Jim Hughes, had me get a comparative study of all my previous CTs which indicated that my tumor was growing. Jim also examined my mutational reports. After his research, he informed the oncologist in Miami that he felt that my mutation was in NF-1 and suggested that a new drug (selumetinib) might could help me. I started taking the drug two weeks after FDA approval. That was four years ago, and I have had no tumor growth since. I am extremely grateful. The actions and commitment of The Life Raft Group saved my life, changed me and gave me a new perspective.
Coping with a GIST Diagnosis
Gratitude is the key to how I cope. I am grateful for every breath that I take and all of the kind people that I have met since joining the LRG. I am grateful for every moment and everything that I experience be it sunshine or rain. I can either complain about the rain or be grateful that I am able to feel the sensation of the cold and wet. I choose to be grateful.
His Advice for Fellow GISTers
Don’t let anything get you down. When trouble comes your way, talk to someone else to get a better perspective. My friend John Abrams says, “Don’t sweat the small stuff and it is all small stuff.”
Hobbies He Enjoys
Yoga, weightlifting, cycling, reading and shopping
#GISTLife Motto
“Don’t do anything that your ancestors would not be proud of”
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
SUPPORT THE LRG & GIST RESEARCH BY DONATING TODAY!
