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 April is Jimit Mody. Here is his GISTory:
Jimit’s GISTory
Jimit Mody, India
I was born and raised in Maharashtra, India, and in 2016 I started experiencing a sharp, persistent pain in my abdomen. I’d had something similar a year earlier that was dismissed as acid reflux, but this time it felt different and worse. At the time, I was preparing to move to the U.S. to work on my Master’s at SUNY Binghamton, but those plans were put on hold when scans revealed four large masses. My doctors told me it could be malignant, benign, or possibly tuberculosis. A biopsy confirmed it was GIST, the C-KIT staining was positive, with no other mutations.
It was a shock, but once I accepted it, I saw it as a speed bump, not a roadblock. I deferred my admission to SUNY and focused on treatment. I started imatinib and worked with my family to learn everything we could about GIST. My older brother and I dove into medical journals and research. Although we questioned the treatment path, we understood imatinib was the standard.
After six weeks, the tumors shrank slightly, but by the next scan, one had started to grow again. In September of 2016, I underwent major surgery—a partial gastrectomy, splenectomy, gastrojejunostomy, and peritoneal debulking. Recovery wasn’t easy, but I resumed imatinib a month later and began working with a naturopath to cleanse my system and rebuild my strength with diet, yoga, and affirmations.
By January 2017, my scans were clear. I started exploring deeper healing practices—Ayurvedic medicine, Tibetan medicine, pulse and urine analysis, and herbal treatments—all alongside traditional care. I also sent my tumor samples to labs in the U.S. for a second opinion. That’s when I learned I had SDHB-deficient GIST. Despite the complexity of the diagnosis, I was still NED and tolerated my current treatment well.
In April, I decided to take some time for myself and backpacked through northern India. I needed that space to heal and reflect. By August, I finally made it to the U.S. to start my Master’s. Settling into life in a new country with GIST wasn’t easy, but I stuck to the routine that had helped me: nutrition, movement, and mindset.
Unfortunately, during a visit home over the holidays, scans revealed a recurrence with multiple metastases in my abdomen and liver. I stopped imatinib and began exploring options in the U.S. My case was reviewed by doctors across the country, and I eventually started Sutent, which I tolerated reasonably well. I adjusted my holistic therapies in parallel and kept up with regular monitoring.
In 2018, I attended the Pediatric & Wildtype Clinic at the NIH in D.C., where I met others living with SDH and connected with Sara Rothschild from The Life Raft Group. That experience grounded me – I saw teens handling this disease with incredible strength. It pushed me to recognize my own resilience, too.
GIST taught me a lot about myself. I became more disciplined, more optimistic, and more focused on living in the moment. I’ve learned to befriend challenges, to find solutions, and to keep going. Life doesn’t stop, even when you’re dealing with life and death.
To anyone newly diagnosed: it’s okay to be afraid. But don’t stay there. Accept it, then ask, “What now?” Be happy, be free, and believe in your strength. If I’d let illness, grief, or financial struggles bring me down, I wouldn’t be here. Just keep going. You’ve got this.
Coping with a GIST Diagnosis
It’s certainly a bit scary and challenging not knowing the exact root causes, proven therapies and other uncertainties. But I try to approach it as any challenge in life. Try to take control of things that are in my hand rather than worrying over the things that aren’t. I try to follow a holistic approach for this – be it a nutrient rich diet focusing not only in the surface but also at a cellular level, Yoga that includes not only exercises, stretches but also breathing exercises (known as pranayam in our local language) and meditation, try to spend some time outdoors be it for walks/hikes/ sports, and a disciplined routine that involves eating and sleeping at the right time. Ideally, I look to move on with my life with the daily chores, routines, work, socializing in order to not fall in a downward spiral thinking about GIST.
His Advice for Fellow GISTers
Always try to keep a positive outlook and keep your head in the game. Try not to lose hope. Try to imbibe some discipline as it helps not only physically but mentally as well. And most importantly don’t give this illness a lot more importance than it deserves, follow a healthy holistic lifestyle and carry on with your daily activities to maintain that normalcy. It’s a speed-bump fellows, we will get past it.
Hobbies He Enjoys
I love to spend time outdoors and with my family and close friends. Hiking, going out for walks and playing some sports like badminton, ping-pong, cricket and football to name a few. Another hobby that I really enjoy and find therapeutic is cooking. This is something that I learnt and became better over time while I was staying in the US.
#GISTLife Motto
I’m usually not the one to quote many lines but I definitely do believe in ‘Mind Over Matter’. As long as we’re able to maintain an optimistic approach in life, no roadblocks/challenges can get the better of us. Stay positive and stay happy!
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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