Primary pulmonary amyloidosis light chain diagnosis

Posted by ejwenz @ejwenz, Feb 19 9:25am

Looking for anyone who has or knows someone who has been diagnosed with primary pulmonary Amyloidosis light chain. It is a rare lung disease and doctors here in Kansas are somewhat stumped as to treatment options. I would appreciate any information. Thank you.

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redhead63 | @redhead63 | Feb 20 9:31am

I would definitely go to the Mayo Clinic because this is such a rare and dangerous disease!

ejwenz | @ejwenz | Feb 20 2:21pm

In reply to @redhead63 "I would definitely go to the Mayo Clinic because this is such a rare and dangerous..." + (show)

The biopsy slides were sent to the Mayo Clinic after local pathology department could not identify cells. Oncologist treated with chemo that they use for multiple myeloma but stopped it after four months as it wasn't effective. Started on immunotherapy for two months to see if that works. If not no other treatment is available. Will ask pulmonary doctor at tomorrows visit if that’s an option. Very hard to find any information on this disease.

lanieg | @lanieg | Feb 21 7:49pm

My cardiac MRI recently revealed light chain, kappa type. I've been referred to a hematologist. Not sure yet what it all means.

ejwenz | @ejwenz | Feb 22 10:08am

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.