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 July is Tom Tiefert. Here is his GISTory:
Tom’s GISTory
My GIST started in 2016 with intestinal bleeding. Although I went to GI doctor, the cause was not found. In the summer of 2018, I had bleeding again and it got so bad my hemoglobin dropped below 7, so I was hospitalized. My hemoglobin level was stabilized, and I was put on a regimen to restore my hemoglobin, which did happen. But GIST was not diagnosed.
I had another episode in July 2019, and I went to South Baptist Hospital in Jacksonville, Florida. They quickly found the GIST tumor with a CT scan. My reaction was that I was relieved that they had found what the problem was. My small intestine was resected to remove tumor and I thought I was home free. But with the follow up visits to the oncologist, I found that he wanted me to take imatinib to keep it come from coming back. That scared me. We did a computer search to find a doctor who was specialized in GIST. We found The Life Raft Group and a GIST doctor at the Jacksonville Mayo Clinic. He accepted me as a patient, and I was now getting better care. Of course, at this point, we would be scared of the GIST going metastatic. But in the summer of 2019, it did go metastatic. This was stressful. It was initially brought under control with higher dose of imatinib, but eventually I had to go through the drugs of Sutent, regorafenib and (the other one). My most distressing side effect was foot and hand syndrome, which got so bad that I had to use a walker. Getting a handicap sticker was helpful. My tumors were growing pretty rapidly after January 1st of this year, and I was out of FDA-approved drugs. We did our research, and we landed in IDRX-42 clinical research trial in February which we are doing at the University of Miami. I was accepted, and this drug at first significantly reduced the tumors, but currently is holding them stable. It has its own side effects, but we do are best to manage and cope.
Coping with a GIST Diagnosis
I cope with the side effects with several methods. I have the good support of my wife, Karen and my daughter Abby. I also have support of friends and stay involved with my congregation of Jehovah’s Witnesses. I am determined to stay physically active, so I usually ride my bicycle for a half an hour to an hour every day, and I also walk and swim.
When I have side effects, I do discuss this with my medical staff and implement suggestions to alleviate these. Then I implement these the best I can. I do monitor my condition by taking my blood pressure daily and keeping a diary so that I have information available for medical staff to give me good suggestions.
His Advice for Fellow GISTers
I personally do not try to be a GIST expert, but we stay informed. However, my wife and I have taken the effort to get a basic understanding of the disease, its progression, treatment options, and what clinical trials are available. The Life Raft Group has been a most helpful research tool. We also attend the informative Zoom seminars so we can stay informed and up to date. We stay in contact with GIST social media forums so we can see how others are coping and how we might benefit. We have kept ourselves informed about clinical research trials and possible side effects of the various drugs.
Medical staff have been very good, but it is imperative to stay informed. Doctors are human too, and they may not steer you down the best path. So, it is very important to have the basic facts when the important decision of a new treatment must be made. Checking in with The Life Raft Group and fellow GISTers is important. You may need to have the backbone to make a decision that your doctor might not agree with.
Hobbies He Enjoys
I have always and do enjoy bicycling. I usually ride 5 to 10 miles a day. I also enjoy walking, hiking and swimming. My hobbies include working on my model trainset, drawing and playing board games.
Motto for Life
I like Isaiah 30:15 which says, “Your strength will be in keeping calm and showing trust”. Having GIST is stressful and going through medical situations is stressful to me also. So, I first tell myself to stay calm, and I do. Then I remember to trust my Creator, Jehovah God. This in turn rubs off onto my medical providers as I learn to trust them in what they do for me.
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
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