Desmoplastic
Small Round Cell
Tumor Charity
Craig was busy working and trying to build the best life he could with his wife when he was diagnosed with Desmoplastic Small Round Cell Tumour. Born and bred in New York, Craig had lost his mother to lung cancer just a year before.
His first symptom was ongoing constipation. Whilst taking laxatives things would improve but the problem returned every time he stopped. After a month of persevering on December the 26th 2024 Craig went to his primary care physician who immediately ordered a CT scan – a scan that found multiple masses in his abdomen and pelvis.
This was followed up by a PET scan which showed significant tumour spread and a biopsy that was done at Craig’s local hospital. The biopsy showed that Craig had DSRCT, a cancer that the oncologist had seen only two cases of in his twenty year career, both of whom had died. Craig was told it was certain that he would die within the next five years.
Craig decided he wanted a second opinion, choosing Emily Slotkin at MSK. Dr Slotkin was honest about the prognosis, but she also offered hope of potential survival. Within five days of seeing her, he was offered chemotherapy. Treatment started a month after his original scan.
In April 2025 after 4 cycles of VDC/IE chemotherapy, Craig had his first surgical resection which was carried out by Dr Gerstile at Sloan Kettering. His spleen and gallbladder were completely removed, alongside part of his liver, stomach, pancreas and diaphram.
After his first surgery Craig did 2 more cycles of VDC/IE chemotherapy prior to his second surgery in June of 2025. In this second surgery Dr Gerstile removed part of Craig’s colon and rectum as well as resecting a tumour off his bladder. A temporary ileostomey bag was needed to give Craig’s body time to recover.
This was followed up by two more cycles of VDC/ IE before a PET scan on the 25th August 25th 2025 showed no evidence of disease. A few days later Craig’s ileostomy was reversed.
One of the most intense parts of Craig’s treatment was the month of whole abdominal radation that followed this, which included a nasty C difficile infection.
Life during treatment was very hard, despite the impacts of chemotherapy including losing his hair. Craig worked full time as a maintenance worker, only taking a few weeks off during his surgeries. His only focus was on trying to keep going – knowing that if he lost his job he would loose not only his ability to support his family but the medical insurance that was paying for his cancer treatment.
Craig is now a year post diagnosis. His last scan continues to show no evidence of disease. He is currently taking irinotecan and temozolomide maintenance chemo and trying to get back to a new normal.