I was diagnosed with multiple myeloma in April of 2016. I had no real symptoms other than slight anemia. I was found to have MGUS around 2008-9, and was being monitored every 6 months, so my disease was diagnosed early.
My first line therapy was with cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD), followed by a tandem transplant. I achieved a partial response from this treatment, with my M-spike now undetectable, but my kappa free light chain level still elevated.
My family and I had a rough 2016, as my wife was diagnosed with breast cancer 6 weeks after I was diagnosed.
Glad to have found the Beacon. It's provided valuable info and support.
Forums
9 posts
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Lper - Name: Lper
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 42
Re: 44 years old, diagnosed with multiple myeloma last year
Welcome to the forum.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: 44 years old, diagnosed with multiple myeloma last year
Hi,
Welcome and sorry to meet you here at such a young age! Wish you a very very long remission. Hopefully there will be a cure for this nasty disease soon.
Welcome and sorry to meet you here at such a young age! Wish you a very very long remission. Hopefully there will be a cure for this nasty disease soon.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: 44 years old, diagnosed with multiple myeloma last year
Hi, and best of luck to you and your wife!
Just wondering, if you've had MGUS for 9 years and had been monitored twice a year, did you skip the smoldering stage altogether?
Just wondering, if you've had MGUS for 9 years and had been monitored twice a year, did you skip the smoldering stage altogether?
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: 44 years old, diagnosed with multiple myeloma last year
Hello Dimamar,
No one knows for sure if I skipped the smoldering stage. Monitoring of my MGUS was based on measuring my M-spike and not my free light chain levels. Not until I was anemic and had a bone marrow biopsy that drove my diagnosis were my serum free light chains measured. I could have had elevated kappa light chains for a while and in the smoldering stage. Who knows.
When I was diagnosed, my M-spike was 6 g/l (or 0.6 g/dL), but my kappa free light chain level as at around 6000 mg/l. My M-spike is now apparently undetectable by SPEP test, and my kappa level is around 1500. I'm hoping the kappa level will keep dropping while on maintenance and that my myeloma is a type that progresses slowly.
No one knows for sure if I skipped the smoldering stage. Monitoring of my MGUS was based on measuring my M-spike and not my free light chain levels. Not until I was anemic and had a bone marrow biopsy that drove my diagnosis were my serum free light chains measured. I could have had elevated kappa light chains for a while and in the smoldering stage. Who knows.
When I was diagnosed, my M-spike was 6 g/l (or 0.6 g/dL), but my kappa free light chain level as at around 6000 mg/l. My M-spike is now apparently undetectable by SPEP test, and my kappa level is around 1500. I'm hoping the kappa level will keep dropping while on maintenance and that my myeloma is a type that progresses slowly.
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Lper - Name: Lper
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 42
Re: 44 years old, diagnosed with multiple myeloma last year
Lper,
I see your M-spike was still low at diagnosis. Was it fairly stable since your 2008 MGUS diagnosis?
When I was diagnosed with MGUS in 2015, the first oncologist wanted to do a bone marrow biopsy right away, yet I waited for maybe 6-8 months. It showed 20% plasma cells (unfortunately, he "forgot" to order FISH) at myeloma diagnosis.
How bad is your anemia, and did it progress over the last 8 years?
What I am trying to say is that maybe you've been smoldering all these years. My understanding is that the longer you smolder, the lower the chance that you become symptomatic.
Was anemia the only reason they decided to start treatment? Your kappa level is certainly high. Was your kappa-lambda ratio more than 100?
I am still smoldering (though the first oncologist diagnosed Stage I multiple myeloma based on skull lesion shown on the x-ray, which were not confirmed later), though high risk because of high kappa-lambda ratio and immunoparesis (low IgA and IgM).
The fact that your M-spike disappeared is surely good. Stay strong!
I see your M-spike was still low at diagnosis. Was it fairly stable since your 2008 MGUS diagnosis?
When I was diagnosed with MGUS in 2015, the first oncologist wanted to do a bone marrow biopsy right away, yet I waited for maybe 6-8 months. It showed 20% plasma cells (unfortunately, he "forgot" to order FISH) at myeloma diagnosis.
How bad is your anemia, and did it progress over the last 8 years?
What I am trying to say is that maybe you've been smoldering all these years. My understanding is that the longer you smolder, the lower the chance that you become symptomatic.
Was anemia the only reason they decided to start treatment? Your kappa level is certainly high. Was your kappa-lambda ratio more than 100?
I am still smoldering (though the first oncologist diagnosed Stage I multiple myeloma based on skull lesion shown on the x-ray, which were not confirmed later), though high risk because of high kappa-lambda ratio and immunoparesis (low IgA and IgM).
The fact that your M-spike disappeared is surely good. Stay strong!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: 44 years old, diagnosed with multiple myeloma last year
Hi Dimamar,
My M-spike was stable and quite low. Yes, it was still quite low at diagnosis. My anemia was slight just below the normal range for the first time in 2016, which led to a bone marrow biopsy and 30% plasma cells. I was stable and asymptotic for 8 years or so.
My M-spike was stable and quite low. Yes, it was still quite low at diagnosis. My anemia was slight just below the normal range for the first time in 2016, which led to a bone marrow biopsy and 30% plasma cells. I was stable and asymptotic for 8 years or so.
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Lper - Name: Lper
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 42
Re: 44 years old, diagnosed with multiple myeloma last year
Hi Lper,
I see, it appears to me that your free light chain levels and ratio were not tracked all these years, and they probably needed to be.
Sounds like your kappa level and probably high kappa-lambda ratio was the reason to start treatment.
From "CRAB" criteria, you only have anemia, but if it's just below the normal range, probably does not count, for you may just need to eat more meat or whatever raises WBC and hemoglobin. But if your kappa-lambda ratio is > 100 (and it probably was with a kappa level of 6000), that is another trigger to start treatment with absence of CRAB.
So you could question why your free light chain levels and ratio were not monitored. But, on the other hand, it gave you 8-9 years of good life with no symptoms or treatment, so who knows. I tend to believe (or convince myself in it lately) that everything that happens is for the better.
Hope your wife is doing well.
Take care!
I see, it appears to me that your free light chain levels and ratio were not tracked all these years, and they probably needed to be.
Sounds like your kappa level and probably high kappa-lambda ratio was the reason to start treatment.
From "CRAB" criteria, you only have anemia, but if it's just below the normal range, probably does not count, for you may just need to eat more meat or whatever raises WBC and hemoglobin. But if your kappa-lambda ratio is > 100 (and it probably was with a kappa level of 6000), that is another trigger to start treatment with absence of CRAB.
So you could question why your free light chain levels and ratio were not monitored. But, on the other hand, it gave you 8-9 years of good life with no symptoms or treatment, so who knows. I tend to believe (or convince myself in it lately) that everything that happens is for the better.
Hope your wife is doing well.
Take care!
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Dimamar - When were you/they diagnosed?: June, 2016
- Age at diagnosis: 54
Re: 44 years old, diagnosed with multiple myeloma last year
You as well.
Thanks, Dinamar.
Thanks, Dinamar.
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Lper - Name: Lper
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 42
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