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 January is Fruzsina Megyesi-Vizli. Here is her GISTory:

Fruzsina’s GISTory

Fruzsina Megyesi-Vizli at the Grand Canyon

Fruzsina, Hungary (visiting the Grand Canyon prior to diagnosis)

In October 2021 at the age of 31, my life took an unexpected turn during a mandatory health screening at work. An ultrasound revealed two masses in my abdomen, the radiologist urged me to get a CT scan as soon as possible. The results were shocking: a GIST originating from my small intestine, measuring 73x48mm, alongside a second mass in my pancreas measuring 38x27mm, and a 12 cm cyst in my abdomen. Additionally, several vertebrae showed sclerotic lesions. A fine needle biopsy confirmed the diagnosis. I was devastated, especially since I had no symptoms.

Two weeks later, I started imatinib therapy. The side effects were challenging at first, but over time, I gradually adjusted to them.  Initially, the surgeon I was referred to considered me inoperable and wasn’t very familiar with GISTs. This prompted me to seek second opinions and consult GIST experts. Eventually, I found a more experienced oncologist specializing in GISTs. The next two years were filled with scans, tests, and consultations regarding surgery. While my GIST decreased to half its original size, the mass in my pancreas remained unchanged, and the large cyst continued to grow, reaching 21cm. A bone scan finally came back negative, but I still faced the frustrating reality that no one would perform the surgery because of the huge cyst.

In February 2024, thanks to social media and a GIST support group, I found the surgical study led by Dr. Blakely at the National Institutes of Health (NIH) in the United States. I emailed him as I had nothing to lose. To my surprise, he replied within hours, saying they accept international patients. That moment reignited my hope after years of being told to just keep taking medication and hope for the best.

Fruzsina & husband on vacation

Fruzsina & husband Zsolt on vacation in Italy post-surgery.

After a few emails and online meetings, I was accepted into the study, and my surgery date was scheduled for April 10, 2024. My husband and I flew from Budapest to Washington, D.C., and we were filled with anticipation and hope.

The surgery lasted 10 hours, during which the remarkable surgical team worked diligently to make me cancer-free. I lost my spleen, a small portion of my small intestine, and the tail and body of my pancreas, but the team successfully removed the huge cyst as well.

Thankfully, it turned out that I didn’t even have metastases. The pathology report revealed not only GIST but also another rare type of cancer: solid pseudopapillary neoplasm originating from my pancreas. My GIST had an exon 11 mutation and a mitotic rate of less than 2/5 mm². I spent two weeks in the hospital, receiving truly extraordinary care.

I’m forever grateful to Dr. Blakely and his team for resetting my clock. They are doing exceptional work to study this rare type of cancer, and I’m honored to contribute to science by being part of this important research.

To this day, my scans have shown no evidence of disease (NED). I’m continuing imatinib therapy and keeping my fingers crossed for future scans.

Coping with a GIST Diagnosis

My best friend’s mom is a GIST survivor, so the term “GIST” wasn’t entirely new to me when I received my diagnosis. I received huge support from them, they also introduced me to GIST Facebook groups where I connected with other patients, including some from Hungary. Reading their stories empowered me and reminded me that I wasn’t alone in this fight.

While my family and friends provided incredible support, my husband emerged as my biggest champion. He stood by me during my lowest moments, encouraging me to keep pushing forward.

I also tend to read about GIST from reliable sources. The Life Raft Group has been saved to my favourites since the beginning. I like to know what’s going on inside my body.

When it gets too much, I step aside and breathe. There are things we can’t control.

Her Advice for Fellow GISTers

Having someone by your side at the doctor’s appointments in the beginning. Information can be overwhelming. Make sure you are being treated by GIST specialists. Advocate for yourself. Second opinions matter. Connecting with other GIST patients can offer emotional support and practical tips. Don’t forget about your mental health!

Hobbies She Enjoys

In my spare time, I enjoy hiking and going for walks. Helps to clear my head. I have also started practicing in pilates and yoga classes again. However, my greatest passion is traveling and exploring new countries and cities with my husband. Or revisiting our all time favourite place, Italy.

#GISTLife Motto

“Life is beautiful in all its colors, even the darker ones, they’re here for a reason.” (Chris Martin from Coldplay)

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

  1. Patient must be a member of the LRG GIST Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has GIST Patient Registry Online
  5. 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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