Our theme for 2023 is Thriving Together and we are going to illustrate that concept throughout the year by sharing the celebrations, triumphs, and milestones that our community is experiencing while living with GIST. See more exciting highlights from #thrivingtogether.
Our Patient of the Month for February is Randy Heiman. Here is his story:
I recently became a member of The Life Raft Group (LRG) in December 2022. I am very impressed with the service the LRG provides for both the world medical community and those challenged with gastrointestinal stromal tumor (GIST) disease. As a patient it is very daunting when your doctor tells you, “You have a rare form of cancer.” Oftentimes, our fear comes from the lack of knowledge. I encourage those of you that are beginning your GIST journey to take time to study the educational and patient support opportunities that await you through the LRG. I believe you will find comfort and hope by connecting with and participating in the LRG!
Since I probably won’t ever be a rock star, I’m hoping being featured as an LRG GIST Patient of the Month will fit the bill for me. My wife, Sarah, and I were both raised in Oregon. We live in McMinnville, which is in the heart of Oregon’s wine country. We have two sons that are 30 and 16 years old. Our oldest son is happily married. He and his wife are expecting their first child, and our first grand baby :)
I’m a retired endodontic dental specialist. One year ago, I retired when I sold my practice to my partner in my practice. It was a perfect transition that was planned over four years. Three months after I retired, during an endoscopic (EGD) examination, a small mass was visualized, which led to other tests and eventually the removal of two gastric tumors. Thankfully, the initial morphologic, immunohistochemical and molecular genetic testing confirmed the GIST diagnosis that should be controlled with imatinib (Gleevec). For multiple reasons, my disease has a high risk for progression. On July 1, 2022, I began daily adjuvant treatment with imatinib. In December of 2022, my six-month CT scan was clear without signs of disease progression.
Coping With a GIST Diagnosis
Living with and treating GIST is a very personal process. I seek to optimize my disease outcome by focusing on the following three essential aspects:
1. GIST disease knowledge
2. Attaining optimal medical care
3. Maximizing epigenetic factors
• Some of us choose a more passive role. I prefer taking a more active role to help in my GIST care and to seek the best chance for “Beating GIST.” The LRG is a wonderful resource for increasing one’s GIST knowledge. The website includes education materials, webinar lecture links and links to YouTube professional presentations.
• My approach to my medical care is to always try to think one step ahead of potential medical needs I may have. Both my surgical and medical oncologists are very knowledgeable in treating my condition. My medical oncologist specializes in the treatment of sarcomas. Additionally, I sought and will seek direction from a medical oncologist who specializes in GIST research and treatment.
• Epigenetic variables are the things we can control that help our bodies and minds fight disease. The foods we ingest help our bodies heal and fight disease. My wife and I choose what we eat wisely. In addition, we also exercise vigorously and regularly to help improve our bodies’ efficiency both mentally and physically. Cancer isn’t for wimps; keeping our psychological and spiritual lives in balance helps guide us and keep us strong when we have to face some of the biggest challenges in our lives.
Last month, I became a member of the LRG Science Team.* The science team works closely with the LRG Staff. We review scientific studies that pertain to the latest GIST research. Our science team works diligently to keep LRG members abreast of the most contemporary thought in GIST research and care. As a new science team member, I am truly amazed by the collaborative effort the science team and the LRG Staff provide for GIST research, physicians, and patients.
Advice for Fellow GISTers
Understanding the complexities of GIST, seeking optimal medical care, and advocating for GIST specialty care can be challenging. Talking to a person who understands GIST is immensely helpful. In addition to the excellent medical care I received, I would have been lost without two knowledgeable individuals in my life that mentored and helped guide me through the first few months of my disease. Especially for new GIST patients, I strongly recommend discussing your ups and downs with someone who can mentor and guide you in your journey.
Through the LRG I find comfort, a sense of community and support as I continue my GIST journey with other Life Raft Group members. The LRG is deeply committed to our members and the LRG works hard to find a cure for GIST.
Hobbies I Enjoy
I am most grateful for my loving family support. We are an active family and during my leisure time I enjoy hiking, skiing, cycling, and playing golf. My newest hobby is learning all I can about development, current research and studying about possible cures for GIST.
“Together, We Got This!”
*If you are interested in joining the LRG Science Team, or would like to learn more about it, please email Denisse Evans, Senior Director, Data Management & Research at email@example.com
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Parmar, Director of Data Mgmt. & Research, for more information: firstname.lastname@example.org