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 August is Tom Malone. Here is his GISTory:
Tom’s GISTory
Tom Malone, Washington, USA
I was first diagnosed with a GIST in 2004, after internal bleeding in my jejunum led to resection surgery that revealed its presence. I enrolled in the Z2001 Gleevec clinical trial, but when the study was unblinded in 2009, I learned I had been in the placebo group.
Twenty years later, in July of last year, I discovered that the GIST had returned and metastasized to my liver and peritoneum. The largest liver lesion measured 5.6 cm, the smallest—located in the peritoneum—was 7 mm, with a total of ten tumors identified.
I began treatment with imatinib in February of this year as it took seven months to navigate the medical system and see an oncologist. After one month, scans showed the tumors shrinking, but by May they had begun to grow again. My oncologist at Fred Hutchinson Cancer Center recommended an immediate switch to sunitinib, but I sought a second opinion from MD Anderson. Their team suggested one of two clinical trials, dependent on biopsy results to determine my mutation. While awaiting those results, they advised continuing imatinib, explaining that while the largest tumors may have developed resistance, smaller GIST cells might still respond.
The liquid biopsy (ctDNA) was inconclusive, so last week I underwent a tissue biopsy and am still awaiting the results. On the advice of The Life Raft Group, I briefly increased my imatinib dosage to 600 mg, but the side effects—severe edema, skin sensitivity, and fatigue—were intolerable. As I was on a long sailing vacation, I reduced the dosage back to 400 mg to preserve the enjoyment of the trip. Now that I’ve returned, I plan to review the biopsy results before making any dosage changes.
Coping with a GIST Diagnosis
Twenty years ago, facing my mortality at age 50 and with a three-year-old daughter, it was a shock. Over time, I’ve learned to accept it. I’ve generally lived a healthy lifestyle, though I drank too much during the pandemic—a choice I regret. I am now alcohol-free, and surprisingly, that change has been easy.
Side effects are challenging, and as I read GIST Chat, I see that many endure significant ones. For me, quality of life is paramount—I weigh the burden of side effects against the potential benefits of the drugs.
His Advice for Fellow GISTers
Acceptance does not mean passivity. I pursue every treatment available, but I also strive to live each day fully, guided by love and gratitude, knowing that everything is transitory. I feel connected to something greater—whether one calls it Om, God, or simply the order of nature. Living in the Pacific Northwest, I spend much of my time in nature, walking in forests and along beaches, sailing on crystal blue waters. The ocean’s strength brings me serenity.
Recently, while racing a 40-foot sailboat off the west coast of Vancouver Island in big waves and strong winds, we faced a sudden emergency when the steering failed. The crew acted quickly, and together we rigged an emergency tiller. It was frightening, but in the aftermath, I felt immense gratitude—for the crew’s skill, for the sea sparing us, for the adventures life still offers, and for my own choice to keep living fully.
Hobbies He Enjoys
I practice yoga, meditate regularly, eat plenty of fruits and vegetables, and choose healthy proteins like wild fish and organic chicken.
#GISTLife Motto
Later this week, I expect the biopsy results, which will reveal my mutations and mitotic rate and help determine my next treatment path. Maybe I’ll have many more years ahead; maybe not. Either way, my intention is clear: to keep summoning the best version of myself, living and loving well, “Keep summoning the best version of myself, living and loving well, for as long as I can.”
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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