UNDERSTANDING GIST
For Patients Living with GIST: Managing Long-Term Treatment
Living with GIST often involves ongoing treatment and regular monitoring to manage the disease effectively. As a chronic condition, GIST requires continuous care, including medication, periodic imaging tests, and adjustments to your treatment plan as needed. Understanding the long-term nature of GIST management can help you stay proactive in your care.
Long-Term Management Strategies:
- Medication Adherence: Ensure you take your prescribed medications, such as TKIs, as directed by your doctor. These medications play a critical role in controlling the growth and spread of the tumor.
- Regular Monitoring: Stay vigilant with regular follow-up appointments, including imaging tests like CT scans or MRIs, to monitor the status of your tumor.
- Managing Side Effects: Work with your healthcare team to manage any side effects from your treatment, which may include fatigue, nausea, or skin issues.
- Seeing a GIST Specialist: A GIST Specialist has expertise in helping to manage your GIST and can help give you the best possible treatment experience.
Prepare for your next appointment with confidence.
Use our interactive Doctor Discussion Guide to create a personalized list of questions and topics tailored to your GIST treatment journey.
Exploring Advanced Treatment Options:
As treatments for GIST continue to evolve, new options may become available, particularly if your current treatment plan is no longer effective. Participating in clinical trials or exploring new therapies might offer additional avenues for managing your condition.
If you or someone you love are facing a GIST recurrence or metastasis while on treatment, you should talk to a GIST specialist to help you identify the best course of action for treatment. A GIST specialist can help you consider all options, including new therapies, clinical trials or combination therapies.
New Therapies:Stay informed about any new medications or treatment approaches that may be relevant to your type of GIST.
Investigational Therapies: Consider joining a clinical trial to access cutting-edge treatments that are still under investigation but may offer benefits beyond standard care.
Combination Therapies: Combination Therapies: Discuss the potential for combining different treatment modalities, such as surgery and TKIs (medicines) and may represent options beyond standard care.
Maintaining Quality of Life
Living with GIST is about more than just managing the disease—it’s also about maintaining your overall quality of life. This involves addressing not only the physical aspects of your condition but also your emotional, psychological, and social well-being.
Quality of Life Considerations
- Nutrition: Work with an oncology dietitian to develop a nutrition plan that supports your health during treatment. Proper nutrition can help manage side effects and improve your overall well-being.
- Physical Activity: Engage in appropriate physical activities that help maintain your strength and energy levels. Your healthcare team can recommend exercises that are safe and beneficial.
- Mental Health: Regularly assess your mental and emotional health, seeking support as needed. Consider mindfulness practices, counseling, or joining a support group to manage stress and anxiety.
Staying Informed
The field of GIST research is constantly evolving, with new findings and treatments emerging regularly. Staying informed about these developments can empower you to make better decisions about your care.
Ways to Stay Updated:
- Regular Check-Ins with Your Doctor: Use your appointments to discuss any new research or treatment options that may be relevant to you.
- Patient Communities: Engage with patient communities and organizations dedicated to GIST to receive updates and support.
- Educational Events: Participate in webinars, workshops, or conferences focused on GIST to learn more about managing your condition. Life Raft Group has many educational offerings for the GIST community that you can access online by going to liferaftgroup.org.