As part of our Faces of Courage Series, we are featuring a patient of the month on the 13th of each month.
Why is the number 13 significant? 5,000 people are diagnosed with GIST each year in the United States.
That’s 13 people diagnosed each day. Read more about this on our Rare 13 site.
Our Patient of the Month for February is Kirk Clark. Here is his story:
GISTory:
My own GIST story began in June of 2017 when I was admitted to hospital as an emergency patient with severe blood loss. A gastroscope revealed a stomach tumour and I was scheduled for surgery the next day. A preliminary CT scan showed no additional tumours and my surgeon was very confident that he had removed all cancerous tissue.
I was referred to an excellent oncologist upon discharge from hospital and he advised that I should begin treatment with Gleevec while the detailed analysis of the tumour was taking place. Eventually we learned that the particular mutation involved in my GIST (PDGFRA D842V on Exon 18) was not helped by Gleevec so this treatment was stopped in October 2017. My oncologist advised that there were various new drugs in development and trial but that, in my case, the best course of action would be “watchful waiting” which has been going on for a year and a half.
I have regular semi-annual CT scans and, so far, there is no evidence of any further disease. I am so grateful for these results but, as any cancer patient can confirm, the time leading up to each scan and its follow up is filled with a mixture of hopefulness and dread. I am heartened by the knowledge that research into targeted treatments is proceeding and I am also thankful to be part of the very supportive Life Raft community. This truly is a journey and it’s much easier knowing that others understand the highs and lows of dealing with this particular type of cancer.
Coping:
Remaining positive is something we all grapple with but I’m trying my best and look forward to the future. In my case this hopefulness led to me marrying my partner this past October! We love to travel, spend time with friends and binge-watch our favourite shows. I continue to work, as does my wife – for us, life goes on.
I am a church -goer and my faith has helped me through some of the low points in this process. I’m not sure I have a motto, but I do try to be more conscious of my blessings and count them every day.
Advice to Fellow GISTers:
“Please don’t lose your faith, hope and trust in God, yourself and people helping you. Try to find a positive point in every trouble you’re facing and take it from there. Never forget that prayers of your loved ones and our group are always with you. We’ll beat that beast together!”
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 Denisse Montoya, LRG Patient Registry Director for more information: dmontoya@liferaftgroup.org
