August 27, 2018 at 9:34 am #97426bglassModerator
Thank you for posting about Joe’s trial. I hope the trial drug is helping him. The required washout periods can be scary, one hopes that the trial then reverses anything that developed during that period.
Regards, MaryJuly 12, 2018 at 12:53 pm #97251FlycatmooseParticipant
Hello, I’m new to the Discussion Board. My name is Judy and my husband’s name is Joe. In February my Joe started complaining of a stomach ache. Being a big guy at 6′ and 210 pounds and very healthy, we didn’t think much of it…he never missed a colonoscopy or a physical at the doctors. The doctor thought it was just an ulcer and asked to do a ultrasound so that he could treat the ulcer. That ultrasound led to a Cat Scan with contrast that same day and by the next day, our whole world turned upside down…..by that night, we were sitting in an Oncologist’s Office going over my husband’s scans. Little did we know at that time how rare and aggressive this cancer was…actually we knew nothing about cancer…..After many tests for 3 weeks straight, it was determined he had Intrahepatic cholangiocarcinoma, It was stage 4 and had already spread to his spine and his periodium. He went through two months of chemo (gemzar and cisplatin) which did nothing to slow his cancer down, infact his tumors grew bigger. He then started on Folfox but got really sick and ended up in the hospital twice for paracentesis and high heart rates and low blood pressure. At this point, they asked us to contact Sloan Kettering to see if they had any Clinical Trials going on. We had gone to Sloan Kettering in the beginning to get a second opinion and they did Genetic Testing to my husband. They found he had 2 Genetic Mutations. He was recently enrolled in a Phase I Clinical Trial of AG-270 which is a treatment for advanced solid tumors with the Homozygous Deletion of MTAP. He fit the criteria and this is his first week on the Trial. He was also tested and fit another Clinical Trial which was a Phase 2 Trial to Evaluate the Safety of INCB054828 in Subjects with Advanced Cholangiocarcinoma including FGFR2 Translocations. He was 99% ready to start this trial when the Drug Company ordered samples of his Liver to do their own biopsys. The doctor did not want to wait and said to go into the Phase 1 Study immediately. We are hoping that this trial shows some progress but it is too early to tell. If it does not, we are hoping to get into the second trial. Right now we are hoping for the best and trying to stay positive. This Cancer is aggressive and unpredictable. My husband had to stay off of Chemo and Radiation for a month to be able to go onto this trial but in the time he was off, his cancer grew to an advanced state. We are hoping that this medicine stabilizes the cancer. We are praying…..
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