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 & Caregiver for November are Sammy Krumholz & Ina Cantor. Here is their GISTory:
Sammy's GISTory
Sammy Krumholz, California
I am 82 years old, born and raised in Mexico City and I've lived in San Diego the last 42 years. My GISTory starts around March 2025, when I had a discomfort in my abdomen. I made an appointment with my GI two weeks later, and when I got there, the pain was gone but nevertheless he suggested a CT scan. When the results came, I got bad news. A stage 4 tumor outside my stomach had metastasized. After tests and biopsies, it was confirmed that I had a 7cm GIST, PDGFRA Exon 12, 6 mitoses per 5mm2, G1.
I was referred to a general oncologist, and she put me on imatinib 400mg to reduce the tumor. We decided to have a second opinion at Moores Cancer Center at UCSD with Dr. Jason Sicklick. He told us that it wasn't operable at the moment, but not to disgard that option in the future and continue with imatinib. As Dr. Sicklick is a surgeon, he referred me to oncologist Dr. Paul Fanta, a GIST specialist whom we really love.
I also went for another opinion at the Mayo Clinic, which confirmed everything from UCSD. I was on imatinib for about four months, but the side effects (tiredness, heavy eyes, mucositis, severe rashes, swelling, loss of appetite) really got to me, so Dr. Fanta decided to stop the imatinib temporarily. I am back on imatinib on lower doses until they find the right dose.
After my last PET scan, it showed that the tumors have been reduced!!!
Sammy and his wife Ina Cantor
Ina's Story
Sammy and I have been married for 35 years. We have a blessed life. We go to bed laughing and wake up laughing. There was the initial shock when we got the diagnosis, and then we both took it in, and we knew we would remain in our usual positive way. We have had moments, and I stress only moments of anxiety. Dr. Fanta is our hero, and we needed one. His smile gives us confidence. We stay in our positive mode. Our daughter-in-law Lisa is our advocate and adviser. It is wonderful to have a calm, loving, and intelligent third person with us each visit. (She bakes cookies for the doctor and staff.) The hardest part is when I know Sammy is suffering and there isn't anything I can do.
Coping with a GIST Diagnosis/Hobbies They Enjoy
After the shock of the diagnosis, we decided to expect the best and live our lives as we always have, very positively. I refuse to change my life – I continue to play tennis, pickleball and golf almost daily and do all my social activities like playing bridge and studying languages. I'm very fortunate to have found The Life Raft Group. They have been a great support for me. Thank you all! I'm also fortunate to have Dr. Fanta, who gives me confidence that I have the best care possible.
His Advice for Fellow GISTers
Find a doctor the specializes in our disease, somebody that you trust and have chemistry with.
#GISTLife Motto
Sammy
I wake up every morning and say to myself "Today is the first day of the rest of my life", and I'm positive it's going to be a good day. I get out of bed and do all the things I have always done. I am a happy man.
Ina
Our number one rule is to keep laughing through all the ups and downs. Sammy is a great patient and we are both fun and funny. I have lived my life quoting Dale Carnegie. "If you act enthusiastic you will be enthusiastic " If we think we are happy, we are.
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!
