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What You Need to Know About GIST

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For a few people who are diagnosed with GIST, the disease has already metastasized, meaning that it has spread beyond the area where it started in the digestive system and into other places in the body.

Metastatic GIST is disease that has spread outside of the site of origin of the primary tumor. This disease cannot be removed surgically. In these cases, the use of imatinib is the treatment of choice. Response rates and disease stability are approximate 90%. Long-term survival (9 years) is 35%.

“Between 10% and 20% of GIST patients have disease that’s spread right from the start,” says Demetri. “That’s frightening, but the good news is that Gleevec is very effective in controlling metastatic GIST. It works in about nine out of 10 patients and keeps the disease under control for an average of about 2 years. But about 17% of our patients with metastatic disease who were in the initial trial that we did of Gleevec to treat GIST are still alive and taking the drug today, 12 years later,” he says.

For people whose GIST progresses, or who cannot take imatinib, the drug sunitinib (Sutent) may provide benefit. With this drug, the response rates and disease stability is over 50%, with a survival rate of over two years.

The drug regorafenib (Stivarga) is used to treat patients who have tumors that cannot be surgically removed and no longer respond to other GIST treatments.

Other drugs such as sorafenib (Nexavar), dasatinib (Sprycel) and nilotinib (Tasigna) are being used for GIST that has progressed on imatinib and sunitinib.

Back in the mid-1990s, doctors didn’t have much to offer people with GIST, but that has changed. “Today we have excellent treatment options, with new therapies being studied in clinical trials,” says Demetri. “We’ve made enormous progress over the past 10 years in treating GIST, so there’s a lot of hope for patients.”

For more information and to connect with other people who have GIST, visit GIST Support International: www.gistsupport.org.  

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Reviewed on May 09, 2012

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