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Questions and discussion to help forum members determine if they may have multiple myeloma, smoldering multiple myeloma, or MGUS.

Have AL amyloidosis, wondering if have myeloma

by Pierrette on Tue Feb 17, 2015 11:36 am

I was diagnosed with primary (AL) amyloidosis. It was discovered by colonoscopy. Since then, I've been followed by an oncologist.

All the tests, like bone marrow biopsy and blood tests, were done and were negative in September 2014. So the last blood test for heavy chain (immoglobilin) are in the range, and the kappa light chain and and lambda light chain are in normal range too, but the k/l light chain ratio is more high than in range:

Kappa: 15.36 mg/l
Lambda: 8.46 mg/l
K/L ratio: 1.82

Paraprotein screen, misc none. Globulin measurement 3.9 g/dl (2.3-3.5)

Total protein electrophoresis 7.8 g/dl (5.7-8.2) Protein total 8 g/dl (6.4-8.2) Urea nitrogen measurement 20 mg/dl (7.0-18.0)

Atypical lymp percent result few, seg% 49 under the range...

My next appointment is March 10. I just would like to know if the test shows myeloma or something else ... Sorry about my English. I'm 54 year old Canadian woman living in the U.S. now. :)

Thank you for helping me to understand,
Pierrette

Pierrette

Re: Have AL amyloidosis, wondering if have myeloma

by Stann on Thu Feb 19, 2015 4:09 pm

Hi Pierrette,

I too have AL amyloidosis and multiple myeloma.

For reasons that are beyond me, I have been told that having multiple myeloma with AL amyloidosis is easier to treat than AL on its own. I might be wrong, because it is not intuitive (to me anyway).

They have been treating me for myeloma and, other than looking for organ damage from the amyloidosis prior to treatments, they are ignoring the amyloidosis. Even though it is called primary, they told me to think of it as secondary.

I don't understand the numbers too well. I only look at one number and it's called an M-spike, or protein spike. Maybe your "paraprotein screen" is looking for an M-spike? Not sure.

Maybe not a useful reply, but thought I'd chime in.

Good luck to you. Stann

Stann
Name: Stann
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 9/11/09
Age at diagnosis: 46

Re: Have AL amyloidosis, wondering if have myeloma

by Stann on Thu Feb 19, 2015 6:28 pm

Here is an article on amyloidosis and multiple myeloma from the Beacon:

"Multiple Myeloma-Associated Amyloidosis – What Every Patient Should Know" (Sep 15, 2010)

Stann
Name: Stann
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 9/11/09
Age at diagnosis: 46


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