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Is amyloidosis a CRAB or ROTI criteria active myeloma?

by 3334 on Mon Mar 03, 2014 11:06 pm

Hi. I enjoy and have gained a lot of knowledge from reading posts and stories on the Beacon.

I am a 54 year old who lives in Texas near San Antonio. I was diagnosed with IgG kappa light chain smoldering myeloma in 2013.

No CRAB symptoms yet, so I have not received treatment or medication. Purpura around my eyes and carpal tunnel in both wrists since 2011 is what prompted me to see a physician.

I have 25% plasmacytosis according to my Feb 2013 bone marrow report.

Jan 2014 labs include kappa light ch - 10,980 mg/L, kappa/lambda ratio - 4,392 and
m-spike of 0.9. In 2013, I had 4 tissue biopsies checked for amyloidosis: fat pad, rectal, bone marrow and carpal tunnel tissue.

All were negative except for the carpal tunnel tissue which was positive for amyloid p.

My 2D echocardiogram and 24 hr urine for protein were normal. I am healthy and have
no health restrictions yet.

I am wondering what symptoms or abnormal labs warrant the beginning of treatment?

Which, if any, cases of AL amyloidosis with smoldering multiple myeloma are treated right away? Is AL amyloidosis considered ROTI [related organ or tissue impairment] indicating active myeloma?

How high do kappa light chains get before damage occurs to the kidneys?

My father died in 2011 at the age of 81 with multiple myeloma. He was diagnosed in 2003 and
received radiation, melphalan, prednisone and thalidomide.

Any help, suggestions, or comments are appreciated.

Thank you.

[Lizzie]

Re: Is amyloidosis a CRAB or ROTI criteria active myeloma?

by Lizzie on Tue Mar 04, 2014 12:04 pm

I've pondered this same question..... At what point is treatment warranted? What does your myeloma specialist say about your elevated kappa LC or ratio? I'm in a similar situation, although they haven't ruled out amyloid. My Kappa light chains are steadily increasing and my only symptoms are neuropathy in hands and legs. For some reason I thought that when amyloid was found they would begin treatment, primarily to avoid kidney or cardiac issues??

Wishing you all the best. Please keep us posted!

[3334]

Re: Is amyloidosis a CRAB or ROTI criteria active myeloma?

by 3334 on Tue Mar 04, 2014 2:45 pm

Thank you Lizzie. I have a local oncologist and have also seen a myeloma specialist in Houston. I have not seen the myeloma specialist since my latest biopsy was positive for amyloidosis. It was suggested to avoid dehydration and medications that may harm the kidneys. I see my local oncologist every 90 days to discuss my lab results drawn the week prior.

My kappa light chains and IgG levels have always been extremely high. The lambda levels, IgA and IgM levels have always been abnormally low. I remember my local oncologist mentioning that if my kappa light chains ever got to 17,000 we would discuss options. Unfortunately, my insurance only minimally covers the specialist so I do not go as often as I see my regular oncologist.

Hopefully your neuropathy and lab results will get better!