The Life Raft Group is celebrating our 20th anniversary as a nonprofit in 2022. For twenty years, our organization has been serving as a life raft for others navigating their GIST journeys. It is the perfect time for us to share the stories. These stories are of those early pioneers who have helped save thousands of lives; the stories of our brave and inspiring members; the advocacy stories of the challenges patients face globally, and the story of this unique patient advocacy organization. You can read more about our Time to Tell the Stories campaign.
Our Caregiver of the Month for March is Thanatcha Cholpradit. Here is her story:
My mum, Wannee, is a 61-year-old GIST patient. She has been on this journey for almost six years and her mutation was identified as KIT exon 11. In 2016, my mum went for the regular annual health check-up (without having any symptoms from the disease apart from fatigue) and that was when the doctors found a 7cm tumor at her duodenum. She had surgery but didn’t take the targeted drug afterwards. In May 2018, she had a recurrence and she was introduced to imatinib at 300mg. After two years, the tumor started to show progression, so she had a second surgery and continued on imatinib at 300mg. But then again, in September last year, her tumor increased in size and the number of peritoneal nodules at perisplenic region. She was put on regorafenib at 80mg, three weeks on, one week off (we skipped sunitinib due to not being able to access the drug in Thailand). Currently, she is on her 7th cycle of regorafenib but seeing that she has severe HFSR (hand-foot skin reactions), the oncologist decided to reduce her dosage until her side effects get better.
Coping With a Loved One’s GIST Diagnosis
It is unfortunate enough for my mum to have cancer, so I try my best to give her a lot of care and I do a lot of research regarding this disease. I was depressed and hopeless knowing that her tumor showed progression but as I mentioned, I gather information and help as much as I can. Along the way, I found The Life Raft Group and I was introduced to one of the best specialists, Dr. Sameer Rastogi (AIIMS, New Delhi) and his team and the support group provided by the Life Raft Group. We are incredibly lucky to have found expert help in such an unlucky event.
Dr. Sameer Rastogi is a GIST expert and a member of the LRG Medical Advisory Board. He is a staff oncologist and faculty at the All India Institute of Medical Sciences (AIIMS) in New Delhi, India. Dr. Rastogi was able to work via telemedicine with Wannee, who resides in Thailand, as his clinic provides free medical care and low-cost treatments to those in India and from other countries. This is a great example of an open access system that helps rare disease patients get the most effective treatments despite country borders and financial obstacles.
Advice for Fellow GIST Caregivers
My advice is super simple; just do your best to make your loved ones happy. Life is so uncertain. I don’t plan things long term, but I’d rather enjoy every day I have together with my mum. Bearing this in mind, every day is more meaningful.
Another thing I keep telling myself is that I will spend all of my time with her. I like to do Mathematics in my head, but this trick can’t be applied to everyone I believe. For example, if I spend time with mum every day eight hours a day, I will get to have 2,920 hours with her in a year, which is seven times more than I spend time with her once a week.
And of course, I have been receiving a lot of support and care from this community (both caregivers and GISTers) mentally & physically. Talking with everyone makes me feel like I’m not alone and I have other shoulders to lean on.
Hobbies We Enjoy
We love going to the grocery stores and the market. Buying and cooking food makes us happy. We love watching movies as well; we have been watching so many of them together. My mum likes to stay home. Small things like doing chores together is fun too!
Not quite a motto but I will do my best for everyone in my life so that I don’t regret anything at all.
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.
Click here for ideas on how to participate in our It’s Time to Tell the Stories Campaign!
If you want to be our 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 Sahibjeet Kaur, Director of Data Mgmt. & Research, for more information: firstname.lastname@example.org