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CURE’s gastrointestinal stromal tumor page features the latest cancer news and updates on gastrointestinal stromal tumors Through articles, videos, podcasts, and more, CURE brings readers the insights of experts, cancer survivors, patients, and advocates to ensure everyone is up to date in the gastrointestinal stromal tumor.

Dr. Breelyn Wilky discusses some of the most recent advancements in GIST treatment, as well as touched on the role of personalized therapy.

What Patients With GIST Should Know About Their Disease 

Preclinical data has showing compelling findings for HT-KIT among patients with rare and aggressive KIT-driven cancers, including GIST and some leukemias.


HT-KIT Shows Activity in Rare KIT-Driven Cancers, Preclinical Data Finds

A new endoscopic tunneling method, STER, allowed a patient to have a GIST removed without surgery, allowing quicker recovery and fewer complications. 

Endoscopic Procedure Removes GIST Without Surgery

A phase 1 trial has initiated and is investigating treatment with ziftomenib plus Gleevec in advanced GIST following progression on Gleevec.

First Patient Dosed in Trial of Ziftomenib for Advanced GIST

SIRT with 90Y resin microspheres led to durable disease control in patients with gastrointestinal stromal tumor liver metastases resistant to TKI therapy.

SIRT With 90Y Resin Microspheres Provides Benefit in GIST Liver Metastases

Dr. Breelyn Wilky stresses the importance of expert guidance and second opinions for patients with GIST, as treatment options continue to evolve rapidly.

GIST Expert Urges Patients to Seek Specialized Second Opinions

Dr. Breelyn Wilky, director of sarcoma medical oncology at the University of Colorado Cancer Center, encourages patients with gastrointestinal stromal tumors (GIST) to seek expert care and stay informed.

With research advancing rapidly and new treatments emerging, she says it’s crucial to get a second opinion from a specialist experienced in GIST. This can help patients better understand their current and future options, as well as potential clinical trials. Because the GIST landscape is evolving quickly, Wilky emphasizes the value of partnering with a provider who is actively engaged in the latest research and developments in the field.

Wilky also serves as the director of Sarcoma Medical Oncology, deputy associate director for Clinical Research, and the Cheryl Bennett and McNeilly Family Endowed Chair in Sarcoma Research at the University of Colorado Cancer Center, UCHealth.

What are the biggest advances in GIST treatment right now? What should patients know?

: The key thing for patients to know, especially as we're talking about just awareness day, is to get educated. Learn about your disease and the research that's being done. There is more research being done, and more new therapies are being developed. The research, understanding, and our tools and expertise are so much better for GIST than most of our other sarcoma types. Therefore, it's worth making sure you get a second opinion or see a provider who really has a lot of experience with GIST.

You don't have to stay there forever, but at least get that initial opinion, have your whole case reviewed, and get educated about your current treatment options, what they might be in the future, and any considerations for your particular tumor that you need to know about. This changes therapy, and there's so much movement in this research space. It's impossible, or at least very, very difficult, for patients to navigate some of the databases out there; even doctors sometimes have trouble finding every clinical trial on clinicaltrials.gov.

The key thing is to see a GIST specialist who has been in these circles, who has gone to the meetings and heard from the companies that are developing these latest and greatest drugs. Get yourself an expert in your corner.

Transcript has been edited for clarity and conciseness.

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Dr. Breelyn Wilky explains that personalized treatments are helping improve outcomes for patients with gastrointestinal stromal tumors.

Personalized Therapy Helps Tailor Treatment for GIST, Expert Explains

Personalized treatment is helping improve outcomes for patients with gastrointestinal stromal tumors (GIST), as explained by Dr. Breelyn Wilky, director of sarcoma medical oncology at the University of Colorado Cancer Center.

Wilky emphasized that no two cases of GIST are exactly alike, even though it’s the most common type of soft-tissue sarcoma. “I describe my patients as snowflakes,” she said, meaning that everyone’s cancer is slightly different. These differences can influence both prognosis and treatment.

Factors like tumor size, location and growth rate help guide early treatment decisions, Wilky noted. Genetic mutation testing plays a key role as well, since around 80% of patients with GIST have mutations at diagnosis that activate a protein called KIT. Even within that group, subtle differences in mutations can affect how a tumor responds to certain drugs.

Wilky encouraged patients to talk with their care teams about their mutation reports to better understand which treatments may work best for their individual cancer.

How is personalized therapy changing the outlook for people living with GIST?

The key thing for patients is to recognize that even though you have GIST, the most common [sarcoma] tumor, everybody’s a little bit different. I describe my patients as snowflakes. While you may all be snowy and shaped prettily and all those things, everyone’s a little bit different. And that’s super, super important, and we’re only learning more about how important it is as we start to think about prognosis and treatments.

Some of the factors that play into this and how you’re going to do — how your disease will behave, what therapies might be good for you — some of it comes down to simple things like how big your tumor was, where it was located along the GI tract, or how quickly it was growing — what we call the mitotic rate. Those are some of the early things we use to establish these risk scores and predict things.

But then the role of mutation testing — so again, figuring out where in your GIST cell did the mutation happen. As I mentioned, 80% of patients have an activated or flipped-on switch for KIT, and 80% of those have the same sort of spot where the mutation is likely to happen. Even within that, there are subtle differences. Getting your mutation report, talking about that with your doctors, understanding what your treatment options are — is there any evidence that certain drugs might work better for your particular tumor than others? Those are the questions that you want to be asking.

Personalized Therapy Helps Tailor Treatment for GIST

With no current approved agent to be used in patients with advanced gastrointestinal stromal tumors (GIST) after Qinlock (repretinib), physicians should feel confident increasing the dosage, says an expert from Oregon Health Sciences University in reference to recent findings from the phase 3 INVICTUS study.

“If you look at professional guidelines, like (the National Comprehensive Cancer Network) NCCN or (the European Society for Medical Oncology) ESMO, which are the big professional cancer guidelines that doctors look at, they would suggest a lot of potential drugs based on the kind of limited data of phase 2 studies, some of which are quite small,” said Dr. Michael Heinrich, professor of medicine at Oregon Health Sciences University and one of the study authors, in an interview with CURE®.

With a dose escalation of Qinlock, patients did not experience any major toxicities or changes in side effects.

“Efficacy wise, I think it's a reasonable choice,” said Heinrich. “And I think the other part of it is that if you're tolerating the drug at the standard dose, these data give us some confidence that that's probably not going to change if you increase the dose. Switching to a different drug, side effects might be different or better, but they might be more. And so that's sort of the uncertainty.”

The data was presented at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting.

Well, you know, this is sort of a knowledge gap. We don't have an approved agent after repretinib for advanced GIST, and so if you look at professional guidelines, like (the National Comprehensive Cancer Network) NCCN or (the European Society for Medical Oncology) ESMO, which are the big professional cancer guidelines that doctors look at, they would suggest a lot of potential drugs based on the kind of limited data of phase 2 studies, some of which are quite small. I think that this, as I said, the progression free survival, once you dose escalated was 3.7 months, which is not as long as we would like, obviously, but it is competitive for anything else out there. So, you know, efficacy wise, I think it's a reasonable choice.


And I think the other part of it is that if you're tolerating the drug at the standard dose, these data give us some confidence that that's probably not going to change if you increase the dose. Switching to a different drug, side effects might be different or better, but they might be more. And so that's sort of the uncertainty. So I think it's a little bit attractive as oncologists to say, ‘Hey, you're doing really well on this drug side effect wise, let's just double the dose because I think that you'll continue to do well side effect wise and we can get some more benefit out of it.’ And we can also think, ‘What is our next option?’ It gives us a little bit more time to figure things out.”

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In patients with advanced gastrointestinal stromal tumors, a dose escalation of Qinlock after recommended treatment with the agent may be the best next step, answering for the lack of a next approved agent after Qinlock.

When Treatment Options Run Out, Consider a Higher Drug Dose in GIST

Dose escalation of Qinlock (ripretinib) showed clinical benefit and had no significant increase of side effects in patients with advanced gastrointestinal stromal tumors whose disease had progressed.

“I think what we learned from the study is that yes, it is feasible to give twice daily dosing, that there is anti-tumor control of a reasonably long duration, and importantly, it didn't seem to change side effects,” said Dr. Michael Heinrich, professor of medicine at Oregon Health Sciences University and one of the study authors, in an interview with CURE®.

The analyses from the phase 3 INVICTUS study, presented at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting, were an important advance to provide an option for a fourth-line treatment, said Heinrich.

This was an important finding, that patients taking ripretinib (Qinlock), if they increase their dose, could get some additional benefit out of the drug. The other question that we were looking at is, “Well, is it true that you could take twice as much and have the same side effects as the once daily?” And that generally was true as well. Only a few symptoms or abnormalities increased taking twice daily. Anemia was a little bit more common in patients who took the higher dose, and abdominal pain was more common as well, although, since the patients had progressive tumors, it could be that the abdominal pain was actually due to the tumor getting worse, not necessarily because of the drug. And so I think what we learned from the study is that yes, it is feasible to give twice daily dosing, that there is anti-tumor control of a reasonably long duration, and importantly, it didn't seem to change side effects. You know, that's a big thing for patients as we switch from drug to drug, you know, we're always hoping for a better effect against the tumor, but sometimes the side effects profile could get much worse or get much better. And it's sort of like, it's a game show, do you choose door one, or you choose door two? And you don't really know what's behind the door, you hope you get the good prize, but you know, might be the goat or something. So, I think this is an option for patients that I think is important to consider.

The findings open up the door for a fourth-line treatment option in patients with advanced gastrointestinal stromal tumors with disease progression.

Dose Escalation of Qinlock Shows Benefit in Patients With Advanced GIST

Melissa Shepherd, an acute care nurse practitioner from the Huntsman Cancer Institute in Salt Lake City, Utah, discusses side effects associated with second- and third-line treatments for gastrointestinal stromal tumors (GIST).

The tyrosine kinase inhibitors Sutent (sunitinib) and Stivarga (regorafenib) are available in subsequent lines after Gleevec (imatinib). These agents have similar side effect profiles compared with Gleevec, but there is less of a problem with edema, Shepherd says.

However, she says, hand-foot syndrome is more of a problem with these second- and third-line agents. Hand-foot syndrome causes painful calluses on a patient’s hands and feet, which can interfere with everyday tasks like driving.

Shepherd also provides an overview of palliative care. She says that there are a couple different ways to view palliative care, but no matter what, the focus is on improving quality of life.

Side Effects Associated With Other Treatments for GIST

Melissa Shepherd, an acute care nurse practitioner from the Huntsman Cancer Institute in Salt Lake City, Utah, discusses side effects associated with treatment for gastrointestinal stromal tumors (GIST).

The most common side effect with Gleevec (imatinib) is fatigue. To combat this fatigue, Shepherd says, patients should stay active, maintain a healthy diet and consider taking the drug at night.

Shepherd says nausea, edema, rash, diarrhea and thyroid issues can all also occur. 

Side Effects Associated With Gleevec for GIST

Melissa D. Shepherd, Acute Care Nurse Practitioner, Huntsman Cancer Institute, discusses the various players involved in the care of a patient with GIST (gastrointestinal stromal tumors).

The GIST health care team consists of (but is not limited to) a surgeon, medical oncologist, pathologist, radiologist, nurses and social worker. Many patients with GIST are referred to a specialty center, Shepherd says, which can provide several advantages.

Health care providers in a specialty center deal with GIST on a more common basis, Shepherd says.

“Often times with specialty centers, too, they’re all housed together — so the surgeon, the radiation doctor, the chemotherapy doctor, they’re all in the same office and talk to each other on a regular basis,” Shepherd says. “[This] can really help smooth the transition between all of your treatments.”

Treating GIST

Melissa D. Shepherd, Acute Care Nurse Practitioner, Huntsman Cancer Institute, describes what gastrointestinal stromal tumors (GIST) are — tumors that arise in the esophagus, stomach, small bowel, large bowel or the rectum. These tumors are not typically responsive to chemotherapy or radiation, Shepherd says, and are treated with surgery and a systemic treatment called a tyrosine kinase inhibitor.

GIST is usually found incidentally with a colonoscopy or an endoscopy; or during a scan for another condition. Initial symptoms of GIST can include abdominal pain, rectal bleeding or fatigue related to anemia. If these symptoms present in a patient, a physician will use a biopsy to diagnose the specific type of tumor.

Gastrointestinal stromal tumor

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