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May 12-18

This Week

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Since the last post, we have continued to have some rough weeks and unexpected news. There was still a lot of leukemia in my bone marrow on my March 6th biopsy. I was admitted into the hospital again for additional chemo treatments. With the biopsy results, we were disappointed to learn that transplant would not happen since I still had too much leukemia. Instead, we had been making preparations for CAR-T cell therapy. During the hospitalization, I experienced a lot of back pain and spasms and was diagnosed with a compression fracture of my 11th thoracic vertebrae. I am walking with a walker and still dealing with a lot of pain from this. 

Matt and I moved to an Airbnb in Rochester for CAR-T cell therapy. I had another bone marrow biopsy the first week of April that did not show much change and still showed a lot of leukemia. I got a fever and was worked up for neutropenic fever. We were first treating it as an outpatient with antibiotics twice daily but then had to be admitted for low oxygen levels. I had MSSA bacteria, rhino/enterovirus and pneumonia. During this current hospital stay, the pneumonia worsened, I was seen by Pulmonary Medicine and Infectious Disease. I had a bronchoscopy and my antibiotics and antifungal medications changed. I was needing some supplemental oxygen too. The CAR-T was on hold until I started to get better from the infection. April 18th we finally started the lymphodepletive chemo and yesterday, April 22 I received my infusion of CAR-T cells. Now I’m being monitored closely for any reactions to the CAR-T. In about a month I will have another biopsy to see how well this treatment worked. We are hoping for good results!

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