My husbands work up included total body CT scans plus an echocardiogram to rule out a secondary location. His was located to his lungs. He was referred to a hematologist who started chemotherapy that they use for multiple myeloma. It did not stop the protein progression and as a last resort they started immunotherapy. We see Dr in a week to see if that is helping. We had very quick diagnosis and treatment but this is basically a rare disease. They are now beginning to have some clinical trials that may be open to you. I think heart is more common than lungs so your response may be more positive. We pray and believe in healing.

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