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 Beatrice Bradford. Here is her GISTory:
Beatrice Bradford, Pennsylvania, USA
Beatrice’s GISTory
My personal journey with cancer and GIST began on February 26th, 2021, during the pandemic. During the two months prior, I experienced some minor issues; feeling fatigue (which was totally not me) and having reflux symptoms, but the attention getter was my losing eight pounds. My Primary doctor placed me on medication for the reflux initially but when I shared that I lost weight he immediately ordered blood work and a CT scan. The scan was done on February 25th, and I was admitted to the hospital that night due to vomiting blood clots.
My scan was done through the same network as the hospital, so they were able to give me the results of the cancer diagnosis in a timely manner. Laying in the emergency room by myself afterwards I had to come to grips of the big “C”. My family was on speaker phone when the doctor gave me the news and needless to say we were all in shock. Once that phone call ended, I was alone with my thoughts and fears. Being a woman of faith, I prayed and I heard that still small voice, “I am here with you.”
I was admitted that night and the next day I had an endoscopy. The staff oncologist shared with me the results of the pathologist report, discussed GIST and what to expect. He did share that since my GIST had already spread from my stomach to my liver, that surgery was not an option, and my care would be palliative.
I was placed on Gleevec 400 mg daily. I visited this doctor twice after discharge but was not totally comfortable with his knowledge or the support that I felt I would need on this journey. So, I asked my primary doctor for a referral and was directed to my now current oncologist at the Abramson Cancer Center, and I am totally satisfied.
I remained on Gleevec (it was reduced to 300 mg in March) until May and after a pretty bad rash, from head to foot, I started Sunitinib in September.
Coping with a GIST Diagnosis
My journey includes absorbing as much information as possible from reliable websites so that I will have a better understanding what my body is going through. The Life Raft Group has been a definite asset for me through their support network and the wealth of information they offer on their website. I also was able to see that I was not on this journey by myself.
Her Advice for Fellow GISTers
It is so important, if at all possible, to surround yourself with a loving support team, even if it’s only one other person. Having someone attend your appointments with you, especially in the early stages, can be extremely helpful. There is so much information to learn so four ears are better than two. Definitely joining The Life Raft Group will provide tons of information and loving support. I found the information there led to more in-depth conversations with my oncology team.
Hobbies She Enjoys
In my spare time, even in retirement, I love to play games on my iPad, do board puzzles and also, I am my husband’s caregiver. Initially this journey feels overwhelming, stressful and scary and this is where I found that my faith gave me the strength to face each day. Regardless of your religious beliefs this is a great time to tune in and lean on your beliefs.
Motto for Life
One of my favorite scriptures is from Hebrews 11:1 – “Now faith is the substance of things hope for and the evidence of things not seen”. Identify some inspirational phrase, scripture or song that comforts you especially when you have those down moments.
“Learn as much as you can, laugh, dance to the music and always look for the positive in all aspects of your life.”
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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