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GIST: Frequently Asked Questions

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Imatinib (Gleevec) may also be taken for up to three years after a tumor is removed, to try to keep the cancer from returning. However, the drug may stop working with time. In these instances, the dose of imatinib may need to be increased or a different drug prescribed.

If you can’t take Gleevec or become resistant to it over time, another drug called sunitinib (Sutent) is available. The drug regorafenib (Stivarga) is used to treat patients who have tumors that cannot be surgically removed and no longer respond to Gleevec or Sutent.

Other drugs such as sorafenib (Nexavar), dasatinib (Sprycel), and nilotinib (Tasigna) are currently under study for GIST.

Research has found that chemotherapy and radiation are not effective in the treatment of GIST.

What is the prognosis for someone diagnosed with GIST?
It’s difficult to predict if GIST cancer will return. Based on tumor size and how fast it is growing, the tumor will be categorized as low, intermediate, or high risk. The location of the primary tumor also plays a role in the risk of tumor recurrence. Tumors in the stomach are less aggressive than tumors that develop elsewhere in the GI tract.

Generally, the smaller the tumor is when it’s removed, the slower it grows and the less chance it will recur. For example:

  • Tumors 2 cm to 5 cm are generally considered low risk
  • Slower-growing tumors 5 cm to 10 cm are intermediate risk
  • Faster-growing tumors of 5 cm to 10 or more cm are considered high risk

If the tumor was not completely removed, or if the tumor ruptured during removal, there is a greater chance of it recurring.

What kind of monitoring do I need after treatment?
After surgery, the recommended follow-up is examinations every 3-6 months, with CT scans. PET scans are not substitutes for CT scans. Recurrent GIST will usually occur within two years after surgery.

If you take imatinib, or sunitinib, side effects of the drugs need monitoring.

Will insurance pay for Gleevec?
Imatinib (Gleevec) is a genetically engineered, biologic drug. These drugs require a complex development process, and the drugs can be expensive. Some insurance companies or policies may not cover drug costs.

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