As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for April is Linda McFarland. Here is her story:
Primary: KIT Exon 9
My GIST journey began in 2014, although I wasn’t diagnosed until July 2015. I knew something was wrong and indeed it was. At that time, my hemoglobin was 4 and my hematocrit was 12. After a hospitalization that included blood transfusions, I was diagnosed with a slow bleeding ulcer. I felt better but still had no energy and with no appetite was still losing weight. My gastroenterologist would not give up and ordered a CT scan which revealed a mass in my abdomen. After seeing a surgical oncologist, surgery was scheduled and the mass as well as part of my small intestine were removed. The diagnosis was gastrointestinal stromal tumor, c-KIT positive and I was referred to an oncologist. My head was spinning with talk of rare disease, adjuvant therapy, blood tests, and CT scans! I was started on Gleevec 400 mg.
As I began to do my own research, I discovered The Life Raft Group and their directory showing specialists in GIST. Living in Pennsylvania I was excited to find Dr. Margaret Von Mehren at Fox Chase Cancer Center in Philadelphia. She ordered mutation testing and the results came back as KIT Exon 9. The side effects of the Gleevec are challenging at times but I am so thankful that my CT scans continue to show NED (no evidence of disease) at this time!
Coping with GIST
I try to keep a positive attitude as some of the Gleevec side effects are not pleasant. I make sure I rest even if that means napping and I stay active working in my yard. However, my appetite is a challenge. Foods I once enjoyed aren’t appealing anymore. So, I mostly eat small meals or snacks throughout the day. When I have an off day, I just try and count my blessings. It’s a day-by-day journey.
Advice for Fellow GISTers
My advice is to do your own research, try, if possible, to find a GIST specialist, ask for mutation testing, and sign up with The Life Raft Group. It can be a lonely and scary journey, so we need all the support we can find. I have been blessed with the support and love of my caregiver and husband, as well as other family and friends.
During my free time, I enjoy reading and learning to crochet.
My motto in life is “Keep Looking Up”. My faith in God has given me strength and, in the process, I have discovered a lot about myself.
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.
Criteria for Patient of the Month
- Patient must be a member of the LRG 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 a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org