Ten Tips for Life with a Rare Disease
The challenges of living with GIST are many – here are our top ten tips to navigate this journey toward thriving and surviving.
1. Get a mutational test
GIST (and increasingly, other cancers) have treatments that are targeted at specific mutations. Without knowing what your mutation is, you may risk being placed on the wrong treatment. Read more about mutations and mutational testing.
2. See a GIST expert
As new mutations are found and new treatments developed for them, it is very hard to keep up to date with what’s out there. Experts simply know more about the disease and its treatments than non-experts do. This is true not just for GIST, but for other rare cancers as well. You can find a list of GIST specialists here.
3. Find a champion
It’s been said that life is a team sport, and when you are diagnosed with cancer that becomes even more true. You need someone to travel along with you on your journey – that can mean anything from gathering data, making phone calls, driving you to appointments, or simply being there to talk to. If you have someone, excellent. If not, give us a call – we have local group leaders, and a staff that is willing to help. State & International Leaders database
4. Connect with other patients
Sometimes you just need to talk about things only a fellow patient can understand. We have multiple online communities (a listserv email group, Facebook) and also conduct periodic in-person local group meetings. Contact us to find out if there is one near you, or if you’d like to start one. You can get information on the listserv by joining the LRG here. See The Life Raft Group on Facebook.
5. Stay organized
Between medications, CT scans, surgeries, and everything that goes with it, there is a lot of information to record. Consider joining our Patient Registry, as in addition to being able to talk to our registry staff, and participating in valuable research that will help others, you will have access to a GISTory, which keeps a record of all your treatments and evaluations in one convenient place – making it easy to access it at any time or bring it with you on a doctor’s visit.
Patient Registry information
6. Manage your side effects
If you don’t control your side effects, you may not be able to continue on your medication, which results in less favorable outcomes – something you don’t want. We provide a free site called SideEQ that gives expert tips for many of the most common side effects for GIST, and also allows you to post your own tips. You can also find information on side effects here and access articles on coping with GIST for patients here.
7. Become your own expert
Learn as much as you can about your disease – in this way you can help your medical team do an even better job of helping you survive. Our website is a great place to start. Beyond that, we have a GIST 101 webcast that covers the basics, and a comprehensive expert patient training course when you’re ready for more.
GIST 101 / Expert Patient Training / Personal GIST Survival Plan / Patient Resource Toolkit / Understanding GIST
8. Take time for self-care
As was stated in a recent edition of our newsletter, GIST is a marathon, not a sprint. Thus you need to take time to make sure you are doing the “little things”- like eating right, handling your stress, and taking time to do the things you enjoy. Work on things that strengthen your mind, body, and spirit. All of this leads to a more positive mindset, which helps you continue on your path to survival.
9. Know that you have options
New treatments are being developed all the time. Our patients live longer at least partly because they are open to out-of-the-box thinking and clinical trials. A GIST expert is more knowledgeable about these than a non-expert, but even if you’re seeing an expert it is still a good idea to learn what you can on your own as well. A great way to keep up to date is our clinical trials website. GIST Clinical Trials Database
10. Have hope
Know that you are not alone. The LRG and the entire GIST community are here to help you on your journey. Feel free to contact us when you have questions, concerns, or just need to talk. Our patients are truly at the heart of all we do. Join The LRG.
Pete presented these top ten tips for Surviving and Thriving with GIST on a Facebook Live on Rare Disease Day, Feb. 28th, 2019.