Jacob’s coughing started in March 2017, and by August it had become continuous. Severe back pain and night sweats were making him miserable. He already struggled with heart and lung issues, and his health continued to decline. His wife, Ann, suspected something was seriously wrong and accompanied him to a doctor’s appointment in Norway. Shortly after, Jacob was diagnosed with acute myeloid leukemia (AML). Due to his lung fibrosis, he was kept in a medically induced coma for six weeks during the first round of chemotherapy.
Once the first round was over, Jacob slowly regained consciousness. At first he could only move his eyes. For months, he communicated with Ann and the medical team by blinking. Eventually, he was moved to rehab to regain some of the 20 kg he had lost – and to learn to walk and eat again. But with Jacob still battling AML, there was little choice but to try a second round of chemotherapy. This time, he underwent the treatment at home, with Ann managing his care. Their children wore protective clothing when they came to visit to reduce the risk of passing on an infection.
“Going through chemo to fight my AML was incredibly difficult because of the painful side effects. I wouldn’t have made it if it weren’t for Ann supporting me during those difficult months.”
After seven months of the second chemotherapy round, Jacob still showed signs of residual disease, confirmed by MRD (measurable residual disease) testing. A new approach was needed. In 2019, Jacob’s hematologist in Oslo referred him to a clinical trial at Haukeland University Hospital in Bergen, led by Professor Bjørn Tore Gjertsen. Jacob and Ann met with Professor Gjertsen, whom they soon came to know as Bjørn, to learn about the Mendus ADVANCE II trial. The trial was evaluating vididencel as maintenance therapy for AML patients with MRD.
For Jacob, the news that another option existed was a turning point. After two rounds of chemotherapy and the accompanying side effects, Jacob was excited by the prospect. The treatment consisted of a series of injections. Vididencel is designed to use the body’s own immune system to build an active and durable defense against tumor cells. The main side effect was redness and some swelling around the injection site for a few days – dramatically different from the side effects he’d suffered during chemotherapy.
“The experience of taking part in this clinical trial was well worth it, given the attentive care we received. The MRD is gone. While I still struggle with the effects from the earlier chemo and my lung and heart issues, my quality of life has improved.”
Jacob and Ann are taking things one day at a time. They exercise every day together, either going for walks in the forest or to the gym. With their first grandchild on the way, they have a lot to look forward to. After everything they have been through, they are finding a path forward.