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Managing GIST

Finding a GIST specialist

Because GIST is so rare, many doctors—even cancer specialists—may not have much experience treating it. A specialist who treats people with GIST often will be more familiar with what you go through and what you may expect. He or she may also be more up to date on the latest treatment options.

In addition to finding a GIST specialist, assembling your own well-rounded care team can help you feel more in control of your disease. It will help make sure you get the care and support that you need, too.

  • You’re in control Learn all you can about GIST and treatments. This will help you have good communication with your doctors. The Life Raft Group has a lot of educational resources. Also:
    • Read up on GIST, attend live events, or watch webcasts
    • Learn about your treatment options
    • Ask your doctor questions if you don’t understand something. The American Cancer Society has some great tips to help the doctor-patient relationship
    • Stay organized—keep track of all your medications, side effects, symptoms you’ve had (with dates), appointments, dates of tests and procedures, bills, etc. Here’s a chart that might help.
  • Consult a dietician Cancer, surgery, and treatments can all change your nutritional needs. A dietician can help make sure you’re eating the best you can. The Academy of Nutrition and Dietetics can help you find a dietician in your area.

The importance of seeing a specialist

Watch two people living with GIST discuss working with a specialist.

Understanding the treatment landscape

The GIST treatment process usually starts like this:

  • Doctors establish the size and location of the tumor(s)
  • Tests will determine how aggressive the disease is
  • Doctors check for factors that suggest if the tumor may grow quickly. This is called the mitotic rate
  • They may also test for gene mutations that can affect how well some drugs work

Usually, GISTs that are localized are removed with surgery. However, surgery might not be the best option if the GIST is too large, there are multiple GISTs that affect several organs (metastatic disease), or the person has health issues that can make surgery risky. In those cases, surgery could be delayed or avoided.

You may have heard the terms first line, second line, etc. used when talking about drugs. These refer to the usual order of treatments, which are defined by the guidelines doctors follow. These guidelines were created over years of research. Guidelines get updated as new treatments are established. First line treatments are the ones doctors usually start people with when they’re diagnosed with inoperable metastatic disease. For most people living with GIST, imatinib is a first line treatment.

If your GIST progresses beyond first line therapy, there are other medications your doctors may prescribe such as sunitinib, regorafenib, or ripretinib. The goal with any of these treatments is to manage advanced GIST and prolong progression-free survival.

Considering multiple treatment options: What to think about

There are a few approved treatments for GIST. Your treatment needs may change over time. Sometimes, even when you take your medication as prescribed, a GIST can still grow. This is called cancer progression. It can happen because the tumor is or becomes resistant to the drug (the drug won’t work like it’s supposed to). If this happens, your doctor may decide to switch you to another treatment.

Key factors to consider when choosing a new therapy:

  • How the treatment works
  • Does it target a specific gene mutation (avapritinib is a medication approved for people with unresectable or metastatic GIST who have a PDGFRα exon 18 mutation. It is another option and may be prescribed at any time). In the future, other medications with mutational specificities may be approved as well
  • How it can help (efficacy)
  • Possible side effects (safety)
  • How to take it (dosing)
  • How much it costs (be sure to look out for each individual manufacturer's savings cards and financial programs)

For some topics and examples of questions to discuss with your GIST care team during your next visit, download this discussion guide.

Managing GIST symptoms and treatment side effects

Unfortunately, side effects are possible with virtually all the treatments you may be prescribed for GIST. Drug makers usually provide information about dealing with side effects on their websites. Your doctor may also be able to offer some ideas to help reduce their impact. Sometimes, it’s hard to tell if what you’re feeling is a side effect from the treatment or a symptom of the disease itself. That makes it even more important to share what you’re going through with your doctor who will help discern whether what you're experiencing is from your treatment or not. If it is, there may be something he or she can do to help.

In addition to speaking with your doctor, you can check out the Life Raft Group's guide to managing side effects. They also offer a web-based platform called SideEQ which makes them easier to track and manage. The American Cancer Society offers online help for managing cancer-related side effects, including treatment side effects.

Sign up for more information about managing GIST symptoms and treatment side effects.

Treatment adherence: Why staying on therapy is important

For any drug to work, it's important to take it exactly as it's prescribed. This is called treatment adherence. For certain drugs, this may mean taking the same dose at the same time every day.

Sometimes, if you're experiencing a side effect from a medication, your doctor may decide to lower your dosage or pause treatment until the side effect is under control. Your doctor will let you know when you can return to your original dose or resume treatment.

It's important to stay adherent to your treatment and take it exactly as prescribed. In order to make sure you're staying on schedule, consider:

  • Keeping a calendar and mark each time medication is taken
  • Setting an alarm or electronic reminder to take medication
  • Storing medication in a location where it is visible every day or aligned to daily routines
  • Asking a family member or friend for dosing reminders

How can I afford my GIST medical expenses?

It’s no secret: treating cancer can be expensive. But cost should not be a barrier to receiving proper treatment. There are many organizations dedicated to helping people with GIST afford treatment. GIST Support International and The Life Raft Group both list groups providing help for everything from co-pays to travel assistance and lodging for your family. It's also helpful to check the manufacturer's websites because they may offer discount cards for their own products.

When choosing a health insurance plan, make sure you understand what the out-of-pocket costs will be, the deductible, and your plan and network types. Healthcare.gov has some helpful tips and things to consider before choosing a plan.

The National Cancer Institute also offers some smart insights into managing costs and medical information, including information on Medicare and Medicaid.

Care Team Discussion Guide

Are you unsure of what questions to ask your GIST care team? This guide can help.

Download guide

Understanding GIST

Know what to expect as you continue on your GIST journey whether you're newly diagnosed or further along.

Discover more

GIST FAQs

Quick answers to some of the most common questions people have, plus links to learn more.

Find answers