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2/12/2016 Latest post:
Welcome to our CaringBridge site. We appreciate your support and words of hope and encouragement during this time when it matters most.
Jay was diagnosed with Cardiac Amyloidosis in December of 2015. It is a rare disease that occurs when an abnormal protein called amyloid builds up in your organs. Jay's amyloid is being produced by abnormal bone marrow cells, and it is depositing in his heart and other organs. It is a disease that sneaks up on you as symptoms don't usually appear until the disease is advanced. That is why Jay went from kayak fishing in late October with very subtle shortness of breath - cardiac testing in November - bone marrow and other tests at Duke in December - to serious shortness of breath and fatigue by January. To treat amyloidosis you have to have a very specific diagnosis of the type of amyloid that is being produced so your doctor can select the best treatment options. The Mayo Clinic provided some of the tissue analysis. Dr. Gasparetto at the Duke Adult Bone Marrow Transplant Center has been encouraged by the results of some investigational drugs that are being developed to treat amyloidosis. She requested that Duke be able to participate in the Vital Amyloidosis Study. This study is being conducted in select hospitals across the country. Jay is the first patient to participate in the Vital study at Duke. It took time to get this clinical trial trial up and running. The delays were difficult for us because we had been told that treatment needed to start as soon as possible. For this particular clinical trial, you had to start the chemotherapy and study drug on the same day. Jay could tell he was feeling worse with each passing week.
Fortunately, everything finally came together and Jay began his treatment journey on Thursday, February 11. He is receiving the study drug once a month, and a combination of a low-dose chemotherapy drug, a proteasome inhibitor, and a steroid every week. He will be monitored very carefully throughout his treatment. We are very grateful that Jay is being treated on an outpatient basis and he is at home. The commute back and forth to Duke is well worth coming home to our favorite "labs," River and Bailey. We are also close to family and friends who play such an important role in Jay's recovery.