As a part of our Faces of Courage series, we are featuring a patient or caregiver 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 Caregiver of the Month for November is Stephanie De Jong. Here is her story:
GISTory
My Dad was first diagnosed with GIST in 2010 when he was admitted to the hospital for severe pain in his abdomen. A large mass was discovered near his small bowel. The Mutational Test Analysis revealed a KIT Exon 11 mutation. He was placed on 400 mg of Gleevec which dramatically reduced the size of his tumor. So much so that the surgery was performed via scope in 2011. He was then placed on adjuvant Gleevec for two years which was discontinued in 2013. Unfortunately, his GIST returned in 2014 with a few small masses discovered near the primary tumor site and peritoneum. He was again placed on 400 mg of Gleevec which had successfully stabilized his GIST for six years.
In May 2020, one of the masses had shown significant progression and was no longer responsive to Gleevec. He was scheduled for surgery in August of 2020, and no changes to his medication were made. On the day of his scheduled surgery, the general surgeon had decided to abandon the operation stating that the tumor was too large. The oncologist had then increased his Gleevec dosage to 800 mg given the relatively fast growth of his tumor. This was a complete shock to us, and it was at this point where I took a more active role in his treatment plan.
Upon request, we were provided with the updated Mutational Test Analysis which revealed a PDGFRA Exon 18 mutation (D842V) in addition to the original KIT Exon 11 mutation. PDGFRA Exon 18 mutations are known to be resistant to Gleevec and most tyrosine kinase inhibitors (apart from avapritinib and repritinib – both of which are unavailable in Canada). Given this information and the limited access we had to these drugs, we opted to enroll in the INTRIGUE clinical trial (investigating sunitinib vs. ripretinib in 2nd line GIST). Since the treatment allocations are randomized there was a 50/50 chance that he would be assigned to either drug. Thankfully, he was randomized to ripretinib, which he has been taking since mid-October. He is now being treated by a GIST specialist who is also the principal investigator of the INTRIGUE trial in Canada.
Coping With a Loved One’s GIST Diagnosis
Coping with my Dad’s GIST diagnosis has not been easy. My emotions have oscillated through anxiety, fear, anger, and frustration. I have found that by transferring some of this energy towards things I can control as opposed to dwelling on things that I cannot has helped me cope with this situation. Once I had learned that my Dad’s GIST was resistant to Gleevec, I had tried to gather as much information as possible to help him make the best decisions in his treatment plan going forward. This involved contacting oncologists for second opinions and pharmaceutical companies to help navigate through possible pathways to access drugs not yet available in Canada.
Advice for Fellow GIST Caregivers
Always stay informed and take an active role in your loved one’s care plan. Make sure you ask the right questions to ensure you agree with the oncologist’s decisions. Join support groups and try to get connected with others who are part of a similar journey. Although everyone’s GISTory is different, it is always comforting to know you are not alone. The Life Raft Group has truly been an invaluable resource, providing us with up-to-date information and guidance. Lastly, I would encourage all patients to see a GIST specialist – even if you feel your case is uncomplicated at the time.
Hobbies We Enjoy
I have always enjoyed listening to 70s music and relaxing. Also, a good comedy movie over the weekends with my Dad. We also always have a good laugh watching the Bachelor/Bachelorette together (not that he ever had a choice with a house full of women). We enjoy the outdoors and going for short walks when the weather is nice. He also really loves spending time with his granddaughter – always singing, drawing and playing with her.
Motto
“When you can’t change the direction of the wind, adjust your sails” – H. Jackson Brown Jr.
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
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 Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org
