The family of Ted Wolf, who died of a gastrointestinal stromal tumor (GIST) at the age of 56 in Palm Harbor, Florida, attends a virtual “GIST DO IT Walk” in Massachusetts to mark the second anniversary of Wolf’s passing. Credit: Life Raft Group.

Colorado dentist John Abrams had to give up his career because of severe hand cramping — a side effect of the medication he took to control his gastrointestinal stromal tumor (GIST).

Monica Anderson, a dental surgeon from Texas, got food poisoning in 2012 after going out with her friends to celebrate a new job. While in the ER, doctors discovered a 9-cm tumor on her stomach — a coincidental early diagnosis of GIST that may have saved her life.

And Erin MacBean, who had been sick since the age of 16, finally learned in 2007 from her Minnesota endocrinologist that she had an ultrarare form of GIST — 1 of only 35 people in the world to have been diagnosed with Carney triad at that time.

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Yet today, Abrams, Anderson and MacBean are alive and thriving after 10 years, even though they were diagnosed at different stages of life, and with different mutations.

All 3 appear in a webinar sponsored by the nonprofit Life Raft Group (LRG), a nonprofit based in Wayne, New Jersey. The group was formed in 2000 by patients in the early trials for imatinib mesylate (Gleevec®), a once- or twice-a-day pill approved by the US Food and Drug Administration in February 2002 to treat adults with GIST.

The webinar — titled “Conversations with the LRG: Long-term survivors share their stories and advice on living well with GIST ”— was moderated by Pete Knox, the LRG’s senior director of research. It offered hope for others with the disease, which is newly diagnosed in 4000 to 6000 Americans every year.

John Abrams GIST
John Abrams. Credit: Life Raft Group.

John Abrams

Abrams, the LRG state representative for Colorado, likes to tell people: “I’m one of the luckiest unlucky guys I know.”

His GIST journey started in 1997, though he was already having difficulty eating due to pain for nearly a year. Abrams described his symptoms to the partner of his brother, an internist, “who was in my chair getting his teeth cleaned.” An endoscopy that same evening revealed a sizable mass on his stomach, which was diagnosed as a leiomyosarcoma. He had it removed but knew it had probably metastasized since it was also attached to his diaphragm.

Following that, Abrams did 4 months of traditional chemotherapy, after which the surgeon, at his oncologist’s request, opened him back up to see if the entire mass had been removed.

“It looked clean so I said to my oncologist that the chemo must have worked,” Abrams recalled. “His answer was ‘we’ll never know.’ ”

In 2001, 4 years later, Abrams developed prostate cancer and had it surgically removed. Two years after that, he had a gallbladder attack. While his gallbladder was being taken out, the surgeon noticed an inflamed lymph node; a biopsy revealed GIST cells, and he was immediately put on 400 mg of imatinib. Finally, in 2004, Abrams developed a third cancer — non-Hodgkin’s lymphoma — which was treated with 20 sessions of radiation therapy.

Through it all, said Abrams, “my cancers have never defined me. They’re just part of the whole package.”

Shortly after his 4 months of chemo, Abrams retired. He now works with his son in real estate, flipping houses. He’s also a consultant for young dentists. And when he’s not working, Abrams plays golf and often boxes with a trainer.

Two things that have helped Abrams deal with the severe cramping in his hands are acupuncture and Pickle Juice sports drinks. LRG has helped him with pretty much everything else.

“The people I’ve met through Life Raft have only enhanced my life. Through them, I found the most loving, giving, altruistic people I’ve ever met,” he said. “It’s an incredible organization.”

Monica Anderson. Credit: Life Raft Group.

Monica Anderson

Anderson, who in April 2021 became a member of LRG’s board of directors, is a dental surgeon, motivational speaker, and author of the book Success is a Side Effect: Leadership, Relationships, and Selective Amnesia.

When her tumor was discovered in February 2012, Anderson lived in Austin, Texas, where there were no GIST specialists at the time.

“I cried for days. I didn’t know I could make so many tears,” she said. “All I remember is the ER physician coming back and saying they wanted me to have surgery the next day.”

Despite a 2-year regimen of imatinib as well as sunitinib malate (Sutent®), nilotinib (Tasigna®) and regorafenib (Stivarga®) — and the side effects they caused — her GIST came back anyway.

“Eventually they did surgery again, a much more aggressive surgery at UT-Southwestern. They removed my stomach, my spleen, part of my pancreas, a liver resection, and my adrenal glands,” she said, adding with a laugh: “When I tell people I don’t have the stomach for that, I mean it.”

Asked how she copes with the cramping and other sometimes severe side effects of imatinib, Anderson said being hydrated, minimizing stress, and not overextending herself all help.

“I’m a motivational speaker, which means I’m a professional optimist. But there are days and times when I feel down. It’s been wonderful to have a supportive network of family and faith, and my kids,” she said. “One of the first things I learned was to remove toxic people and situations from my life, for my own survival.”

Anderson attributes her own long-term survival with GIST to her focus on faith, hobbies and “something on your calendar to look forward to” — as well as not dwelling on what she can’t do.

“For example, I was angry with my family for eating ice cream in July, after I had my surgery, so I made myself flip the switch: I shouldn’t be punishing them for something that has occurred to me,” she said, adding: “I’m not telling anybody what to believe in, but I do believe a larger hand is at work here. That’s what motivates me to go out and share my story.”

Erin MacBean. Credit: Life Raft Group.

Erin MacBean

Shortly after her 16th birthday, MacBean started feeling dizzy, her heart was racing, and she was barely able to crawl to the bathroom. Tests revealed high blood pressure and adrenaline levels 500 times normal. The Florida teenager was told she had a tumor; in July 2000, her left adrenal gland was removed.

Yet throughout that school year, MacBean kept losing blood, forcing her to keep going back to the hospital to receive continuous blood transfusions.

“The fourth time, they turned the scope to see where the stomach and esophagus meet, and saw a tumor. They removed one-third of my stomach. But they didn’t give me a name for the tumor.”

Later, MacBean learned she had SDH-deficient GIST, a rare form of the disease that affects 5% to 7.5% of GIST patients. SDH is short for succinate dehydrogenase, and most people with this subset of GIST are children or young adults; females are more likely than males to have it.

“I’m happy that I got it when I did, so I didn’t lose anything,” she said. “Facing all these different health issues helped me going forward. You learn to go with the flow.”

Following high school graduation, MacBean went to college, met a boyfriend, moved to Minnesota, got married and, in 2007, became pregnant. After her baby was born, doctors discovered a tumor on her heart — forcing her to have open-heart surgery at the age of 25.

“As soon as that tumor was taken care of, a whole new life opened for me. I started to dive into research and helping other people,” she said. “Even my eye doctor was telling his patients my story. Nobody really knew about this weird disease, and I wanted people to know.”

But her ordeal wasn’t over. In July 2011, MacBean had a routine scan, which uncovered a tumor in her lung. That made her one of only 35 people worldwide with Carney triad, or the presence of 3 distinct cancers: GIST, pulmonary chondromas, and extra-adrenal paragangliomas.

Now living in Seattle, MacBean said helping other “GISTers” has given her life added purpose.

“It’s a worldwide disease, and your age or ethnic background doesn’t matter. It’s a roll of the dice,” she said. “Connecting with people, finding your fuel to keep moving on — I tried to do that from the start, because I was frustrated there was no information for a teenager to understand, and the internet was really new. But now it’s all about redirecting people to the right channels.”