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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Relapse after 4-year remission - am I now smoldering?

by lys2012 on Tue Jun 24, 2014 4:12 pm

It looks like I'm starting to relapse after being in a CR for the last 4 years following my induction and stem cell transplant.

When I was diagnosed with multiple myeloma, my M-spike was 98 g/l [9.8 g/dL]. In March my first detectable m-spike in 4 years came back very low at 1 [0.1 g/dL], then three months later at 3 [0.3 g/dL].

I'm going back for bloodwork in August. My doctor seems to think I will not need treatment for at least a year and maybe two.

Does this mean I'm smoldering myeloma?

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Relapse after 4-year remission - am I now smoldering?

by Ron Harvot on Tue Jun 24, 2014 6:22 pm

The term "smoldering myeloma" is used to describe a condition that people have prior to being diagnosed with full active multiple myeloma. I have not heard that term used once patients are diagnosed and treated for full multiple myeloma.

I think you were correct with your original description of beginning to relapse. It is not yet in a fully active relapsed state if you don't have any of the other CRAB indicators.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Relapse after 4-year remission - am I now smoldering?

by lys2012 on Tue Jun 24, 2014 11:09 pm

Thanks Ron, living with myeloma or watchful waiting, is confusing and hard.

In 2010 I was very ill when I was diagnosed with advanced myeloma so I started treatment urgently. My relapse seems to be progressing slowly, so it is a different type of myeloma then what I experienced before. I'm not sure if I have symptoms or not. Found out I have osteopenia, which is new for me, but it might due to hormone imbalance I have as a side effect of chemo(low estrogen).

lys2012
Name: Alyssa
When were you/they diagnosed?: 2010, Toronto, Canada
Age at diagnosis: 32

Re: Relapse after 4-year remission - am I now smoldering?

by Wayne K on Wed Jun 25, 2014 11:23 am

I've been in much the same position, 3 1/2 years after a SCT. My lambda light chains began to rise and my M-spike to become present.

I had no maintenance regimen until April when I started 15 mg of Revlimid. My numbers have receded and next week I will have my 3rd set of tests to monitor my disease.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70


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