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 Patient of the Month for November is Americo Blancato. Here is his story:
Americo Daniel Blancato, Georgia, USA
My journey began in June of 2017. I had a kidney stone removed and my urologist spotted something on my x-ray and did some more tests including a biopsy. I had a 12.5cm GIST tumor on my stomach. My daughter and I did a lot of research in order to be fully informed. The tumor was removed in September of that year. I had a small amount of stomach removed and there were clear margins. A PET scan three months later revealed another 2.5 cm GIST Tumor between my upper and small Intestine. I was put on imatinib 400 mg. Three months later my next PET scan showed no sign of tumor (NED- no evidence of disease). I have had PET scans every six months since then and to this day I am still NED!
The best advice I got was from a lady who lost her husband from GIST back when my tumor was found. She told me to be in control of my journey, find a GIST specialist, and contact the Life Raft Group (LRG). I have done all three. The Life Raft Group recommended Dr. Gina D’Amato as my specialist. She immediately recommended I get mutational testing. I came to realize that having a great oncologist doesn’t ensure that they are totally familiar with my rare cancer. While agreeing to do the mutation study, my local oncologist didn’t know where to get one. Dr. D’Amato and my oncologist started working together and I had the best of both worlds. I am in an HMO network so I have to be referred to doctors not in my network.
I have a KIT Exon 11 tumor, which I understand is very responsive to imatinib. My tumor was slow growing. I tell you that I have been fortunate. I have had puffy eyes, cramps, low energy, and itching as my major side effects. While my quarterly blood tests have been good, my phosphate level was a major concern as a side effect from Gleevec, and taking four phosphate supplemental pills a day wasn’t helping. Life Raft to the rescue!!! I talked to Jerry Call at Life Raft and he suggested I talk to an endocrinologist. Great suggestion, and I got an immediate referral from Kaiser Permanente. After taking blood tests every month for six months and adjusting my medicines and vitamins, I was down to one phosphate supplemental pill and had 30% more energy. It made a huge difference. I now battle everyday with the other side effects, but I consider myself fortunate to still be living and my quality of life is very acceptable.
Coping with GIST
Thank you, Life Raft Group for being there! I can’t wait to go to the next conference. I still have my plane tickets on hold from the past two cancellations. I have both of my Covid 19 shots and the booster and look forward to New Orleans or wherever the next conference will be. God Bless All My Fellow GISTers.
Advice for Fellow GIST Patients
I have been married for 38 years and my wife and I have enjoyed mentoring other people who have come our way. The greatest value of wisdom is when it is shared with others. I have a deep faith that carries me daily and I love encouraging others on their journey in life.
Hobbies I Enjoy
Several years before developing GIST, we moved for the first time in 30 years to a lake/mountain community in Georgia. I heard about Pickleball and decided to try it. I fell in love with this wonderful game. I play two to three times a week and even help in training newcomers. Between this and working out at a fitness club a couple times a week and my Pickleball, I feel like I am doing well for a 75-year-old man.
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 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, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org