Amy in Italy 2017

Amy Brewster

First post: Apr 4, 2019 Latest post: Apr 12, 2023
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  Amy's story with Waldenstrom's Macroglobulinemia started in 1998 when a routine blood test identified a suspicious protein. At the time it could have been any of many diseases, mostly cancers. Amy saw an oncologist who conducted a bone marrow biopsy. This was inconclusive and Amy embarked on a journey of semi-annual doctor's visits. Finally, in 2017 Amy's cancer was identified as Waldenstrom's Macroglobulinemia and as the year progressed she experienced anemia, which lead to treatment in the fall of 2017 and the winter/spring of 2018. Treatment consisted of a series of infusions. In the Spring of 2018 Amy was free of symptoms and her blood work was very good. In late fall of 2018 she had more blood work to determine her condition prior to the annual winter trip to Anza Borrego. Everything was good. In late January Amy came down with flu-like symptoms. This was pretty common in Borrego at the time as a virus was going around. Several visits to the local clinic, and to the ER at Isenhower hospital ensued, but Amy was reassured that it was probably a virus. Finally Amy contacted her oncologist in Salinas who recommended a bone marrow biopsy. She then called her local oncologist in La Quinta who ordered blood work and made an appointment for the next week. By the time we got there Amy could barely get out of the car she was so weak. The doctor ordered her to immediatly go to the City of Hope hospital in Duarte. we drove there, they were waiting for her, and she was immediatly admitted. This was March 5th. She underwent a round of EPOCH chemotherapy over the next week, and spent the next 2 weeks in the hospital recovering. Amy was released on March 26th and we moved to a local hotel for follow-up. The medical team decided the best treatment was a daily oral medication (Ibrutinib) and future infusions of Retuxin. Amy started that on Friday April 5th and we remained at the hotel. Her blood work steadily improved and she has recovered much of her strength. We were able to go home in early June. Onö October 11, 2019 After being released from City Of Hope and going home in June Amy relapsed again in early August 2019. She was admitted to Stanford Medical Center and was immediately started on EPOCH chemo therapy. We learned that her Waldenstrom's Macroglobulinemea had "transformed" into Large B Cell Lymphoma, but the Waldenstrom's cancer is still there too. She responded to EPOCH well and was released at the end of August. Back in Salinas she was put on a regimen of RCHOP chemotherapy responded well. Her medical team at Stanford recommended a stem cell transplant some time in the future but we have reservations because of the many serious side effects resulting from the transplant. At this point we continue to evaluate her options while she receives treatment. She continues to respond well to the RCHOP. Update: March 2020: A PET scan conducted in early January 2020 revealed some suspicious spots in Amy ankles and ribs. Her doctor at Stanford and her doctor at City Of Hope decided that the best treatment would be CAR T therapy where Amy's T cells would be modified to identify and attack her lymphoma. This new treatment would be performed at the City Of Hope because they had an opening for her. We came down to Duarte in February for the preliminary treatment of removing T cells. They were sent to a lab to be modified into Lymphoma hunters. On March 12 th we returned and Amy started a round of preparatory chemo therapy and had her modified T cells re-infused on March 18th. Amy tolerated the CAR T therapy well and after about 3 weeks we returned to Salinas. She slowly regained her strength and we are scheduled for another PET scan at City of Hope in July. Amy's PET scanned in July showed no indications of the Large B cell Lymphoma and concurrent blood tests indicated that the CAR T might be eradicatingg these Waldenstrom's as well. She has another PET scan anpd bone marrow biopsy scheduled for Remember 2020.ity

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