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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Re: Review article - smoldering multiple myeloma

by ciro on Thu Jun 04, 2015 7:43 am

Hi all,

I have recently learned that I have the t(4:14) defect. I also have a CKS1B gene duplication on chromosome 1. My predominant abnormal protein is IgA lambda. My FLC ratio ranges from 8 to 11. So I have several of these risk factors.

However, I think I am fairly early in the disease process, in that my numbers are pretty low (paraprotein 0.3 - 0.4 g/dl, IgA 700-850 mg/dL). Lambda FLC has been trending upward from 80 to 102 mg/L from fall 2013 to now. I am on the borderline of MGUS / smoldering multiple myeloma on the basis of a bone marrow biopsy showing 5-10% plasma cells.

In my less frightened moments, I think that it will be interesting to see how things will go over time. There is certainly a lot of great research going on and hopefully it will benefit all of us.

I think part of the point of the review article may be to open up possibilities for folks with these high risk factors to participate in research studies and/or early treatment if they choose to do this.

I am interested that several of you take large doses of curcumin. I try to use a lot of turmeric in my diet these days, but I may investigate more about use of this supplement. How do you get these large doses of curcumin, and what has convinced you that it is beneficial?

Ciro

ciro
Who do you know with myeloma?: me
When were you/they diagnosed?: MGUS 2013, SMM Feb 2016
Age at diagnosis: 62

Re: Review article - smoldering multiple myeloma

by koontzkg on Wed Apr 27, 2016 12:29 pm

I've encountered many patients, like me, who have AL amyloidosis and also have a diagnosis of smoldering multiple myeloma.

In the above article, it appears based on the table that differentiates smoldering multiple myeloma from MGUS that smoldering multiple myeloma and amyloidosis are mutually exclusive diagnoses, as is MGUS and amyloidosis. Am I reading that right?

I've added a screenshot of the table. Thoughts?

Capture.JPG
Capture.JPG (43.27 KiB) Viewed 277 times

koontzkg
Name: Kathy
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2/2013
Age at diagnosis: 51

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