In our monthly patient and caregiver stories, we share our community’s stories because each GIST journey matters. Your experiences as a rare disease patient or caregiver create a tapestry of strength, resilience, and shared understanding. By sharing, you not only break the chains of isolation but become a beacon of hope for others facing similar challenges. Together, these collective narratives shape a powerful force that drives awareness, research, and advocacy. Your voice matters, and by sharing your story, you contribute to building a stronger, more connected, and empowered rare disease community. Help others realize that even though they battle a rare disease & that each GIST case is unique, they are not alone.
Our Patient of the Month for June is Russell Baratz. Here is his GISTory:
Russell’s GISTory
Russell, Virginia, USA
My GIST history is a complicated one. When I was in my 20’s, I was diagnosed with neurofibromatosis type 1 or more commonly known as NF1. Fast forward to 2021 when during a routine colonoscopy doctors found a mass about the size of a golf ball, and they thought it was cancer. At this point it was time for surgery. It was June 24th of that year when surgeons took out the mass turned out to be a lipoma, though thankfully it was not cancer. I did have complications and was in the hospital for almost two months. By the third surgery they removed half of my colon, and the surgeon noticed about 15 other tumors up and down my small intestine. He removed one of them and the biopsy on that came back as a GIST. With this many tumors additional surgery was not an option as I would have no intestine left.
So, this is where my complications with NF1 came into play, I was told that GIST occurs in about 25% of all people with NF1. Which makes it even more rare in my case. I feel that when I turned 60 years old all these complications started. In addition to the GIST, I had other types of tumors as well along with vascular abnormalities. In September 2022 I had a stroke. 2023 brought a lot of other medical conditions that were colon and NF1-related. It’s been a tough few years, but I’ve stayed strong with a positive attitude and a loving family that’s been there to support me.
Throughout the years of MRI monitoring there was no change in the tumors. It wasn’t until late 2024, early 2025, that my oncologist said that one of the GISTs was growing. NF1 related GIST lacks the typical KIT and PDGRFA mutations found in other GISTs and does not respond to imatinib. Facing the idea of another surgery given the complications that I had in 2021 made me worried. This is where The Life Raft Group came into my world. My son found the LRG on the internet, I joined the LRG, and the Patient Registry. I was assigned a mentor, joined bi-monthly support calls, and watched a bunch of videos. Having a mentor and talking with other GISTers really lifted my spirits. When you can share experiences and you know you’re not alone in what you’re dealing with – in some ways that makes you feel better.
The Life Raft Group also pointed me towards the National Institutes of Health (NIH). I attended what was supposed to be a day of learning but turned out to be a “Natural History Study of Rare Tumors” specific to NF1 with GIST. I am now in this study and one of 11 people internationally enrolled in this study. I am now followed by a large team of doctors and specialists who will consult on the next steps in my journey. I feel blessed to be part of this and I’ve got The Life Raft Group thank for it.
My oncologist started me on selumetinib a few months ago and I had some adverse reactions to it and had to stop. So, as this article goes to print, I will have yet another scan. It will show if the GIST has continued to grow and what the next steps will be. I am still worried about what will happen next, but I have a great support network. A loving family who will be there for me through all of this, a great team at NIH and the folks at The Life Raft Group, which I’m thankful to be part of.
Coping with a GIST Diagnosis
I cope by staying busy. As a chef all my adult life, I’ve been in kitchens, working in many different capacities. After my stroke and dealing with GIST, I’ve had to stay positive. I still cook at home; I still work part-time as a culinary consultant and workout at the gym three days a week to build strength and range of motion on my weak left side. I also feel a sense of humor also helps in coping. I cope by being part of other support groups. My coping skills helping others, and when I help others.
One of the questions I always get is: “Chef, what is your favorite food?” My answer is HOT DOGS. It always gets a laugh! After 40 Years of cooking, why is it hot dogs? Well, in one of the contracts that I used to run with the National Park Service (NPS) on the National Mall in Washington DC, we sold 400K hot dogs a summer at $7 each. It adds up to a lot of money. That is why hot dogs are my favorite food. This never fails to get a laugh. (My favorite is actually sushi.) I like to make jokes because for me that is the best way to cope after all that I’ve been through.
His Advice for Fellow GISTers
My advice to my fellow GISTers, take it one day at a time, be positive, and feel blessed about where you are. You will make it through, and think it’ll be better tomorrow. Have a sense of humor – you’re not alone. Others are on this journey too, and we’re all here to help one another.
Hobbies He Enjoys
I used to have many hobbies before my stroke. Being disabled with a weak left side limits what I can currently do. I still enjoy cooking teaching my children – how to be accomplished cooks in the kitchen. All three of them are my sous chefs. I enjoy teaching others and working part-time for my contract food service management company of 16 years. I work on a lot of different projects. I consider work my hobby, because it’s not really work if you love what you’re doing. I write menus, recipes, promotions, special projects for food service operations across the country and administer the company’s culinary websites. I consider going to the gym a hobby as I’m dedicated to continuous improvement and feeling healthier.
#GISTLife Motto
“PAY IT FORWARD!” That is what I tell everybody. No matter what you’ve been through personally – try to help others. That is what gives me the ultimate satisfaction.
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 our Data Mgmt. & Research Team, for more information: patientregistrydepartment@liferaftgroup.org
SUPPORT THE LRG & GIST RESEARCH BY DONATING TODAY!
