Understanding GIST
Living with GIST: managing long-term treatment
Living with GIST often involves ongoing treatment and regular monitoring. Living with GIST calls for continuous care — medication, periodic imaging, and adjustments over time. Understanding the long-term nature of GIST can help you stay proactive.
Jeff, Living with GIST and his wife, Zelda
Long-term management strategies
- Medication adherence. Take prescribed medications such as TKIs exactly as directed — they play a critical role in controlling the growth and spread of the tumor.
- Regular monitoring. Stay vigilant with follow-up appointments, including imaging tests like CT scans or MRIs, to monitor your tumor.
- Managing side effects. Work with your care team to manage side effects, which may include fatigue, nausea, or skin issues.
- Seeing a GIST specialist. A specialist has expertise in managing GIST and can give you the best possible treatment experience.
Doctor Discussion Guide
Prepare for your next appointment with confidence
Use our interactive guide to create a personalized list of questions and topics tailored to your GIST journey.
Exploring advanced treatment options
As treatments for GIST continue to evolve, new options may become available — particularly if your current plan is no longer effective. If you or someone you love faces a recurrence or metastasis while on treatment, talk to a GIST specialist who can help you consider all options.
New therapies
Stay informed about new medications or treatment approaches that may be relevant to your type of GIST.
Clinical Trials / Investigational therapies
Clinical trials study new approaches to treatment that are not yet approved by the FDA. Trials may or may not provide a direct benefit to you, and your doctor can help you understand the potential risks and benefits based on your individual situation. Ask your healthcare provider whether a clinical trial may be appropriate for you.
Combination Approaches
Treatment for GIST may involve a combination of approaches, such as surgery along with targeted therapy, depending on tumor characteristics and stage. Your healthcare team can help determine whether a combination of treatments may be appropriate for your specific situation.
Maintaining quality of life
Living with GIST is about more than managing the disease — it’s also about your overall quality of life, addressing physical, emotional, psychological, and social well-being.
- Nutrition. Work with an oncology dietitian on a nutrition plan that supports your health and helps manage side effects.
- Physical activity. Engage in appropriate activities to maintain strength and energy. Your care team can recommend what's safe.
- Mental health. Regularly assess your emotional health. Mindfulness, counseling, or a support group can help manage stress and anxiety.
- Stay connected. Engage with patient communities and organizations dedicated to GIST for updates and support.
Next step