Scott H.

October 2015: In connection with an annual doctor’s appointment, my blood work came back that my hemoglobin was extremely low. I had generally been feeling fine so my doctor ordered another blood test since maybe it was lab error. When the second lab test confirmed the low hemoglobin count, I was sent to the emergency room. I spent 5 nights there, where I had 2 blood transfusions, an iron infusion, colonoscopy, endoscopy and a CT scan. The results of these tests came back clean, but my hemoglobin still wasn’t going up much. I was released from the hospital with unexplained iron-deficiency anemia. When they started to ask me my symptoms, they weren’t anything I ever thought about. I had weight loss of 15-20 lbs over the past 6 months, but I thought I was just eating healthier and being more active. I also got winded easily, but I was never really in good shape to begin with. There was nothing else to suggest such a great loss of blood. No trauma or blood visible in the urine or stool.After my hospital visit, I saw a gastroenterologist who performed a capsule endoscopy. It’s pretty much the Magic School Bus going through my GI tract taking pictures every so often. This test also came back negative. For the next 12 months, I would see the same hematologist who would put me on iron IV every couple of months to keep my hemoglobin as high as it could, but I was still anemic.August 2016: I proposed to my fiancee, Jenae (she said yes!) and we set a wedding date for December 2017.December 2016: I decided to see a new hematologist who did a stool sample analysis. They found traces of blood in my stool and they had me go see a GI. I had a colonoscopy and endoscopy re-performed, which again came back negative. Since these tests do not show the full picture of the GI tract, another CT scan was ordered.February 2017: This time, a mass was found in my small intestine and lesions were found in the liver. A biopsy of my liver lesions came back inconclusive. We decided to go see a surgeon at Memorial Sloan Kettering. There, Dr. Allen recommended surgery to remove the mass from the small intestine and biopsy the liver. I underwent the surgery a week later in March 2017, spent 6 nights in hospital and got the biopsy results 2 and a half weeks after my surgery. The biopsy results came back as clear cell sarcoma of GI tract that had spread to the liver. A diagnosis so rare, that Dr. Allen had never seen it before. He immediately connected us with Dr. Gounder, a sarcoma oncologist at MSK.May 2017: I had another CT scan which showed the lesions in the liver grew. At this time, I was healed up from the surgery and I was able to begin treatment. Since there is no drug available to target the EWSR1-ATF1 gene fusion that my tumor presented, Dr. Gounder recommended a targeted therapy drug, Votrient (pazopanib), which is FDA approved for advanced soft tissue sarcoma. I seeked second opinions at MD Anderson as well as at Northwell Health on Long Island. All of them agreed Votrient was a reasonable first step.
December 2017: Jenae and I had the most beautiful wedding on Long Island, NY.As of the time that I wrote this (May 2018) I have been on Votrient for over a year now and my CT scans have shown a slight decrease in tumor size and I am considered to have stable disease. I understood how rare this disease is, and was searching throughout internet cancer boards for anyone else who has experienced this. I also set up Google alerts for “clear cell sarcoma” for anything that might be in the news about it. One day, I got a Google alert and saw an article about Sara and Sara’s Cure in a local newspaper in Charleston. I read Sara’s story and saw the similarities of our medical journey’s. I immediately reached out and shortly thereafter, set up a FaceTime call with Sara and her parents. I was so impressed by how knowledgable they were of this rare disease and the connections they have already made at MSK and Oregon Health and Science. The support to find a cure for this disease had instantly doubled.

Clear Cell Sarcoma Foundation is ready to answer any questions you may have.

If you need immediate assistance, please call our general line and leave a detailed voicemail.

Your message has been submitted.
I will get back to you within 24-48 hours.
Oops! Something went wrong.