Hi RogerAN,
Glad I could help ! We are all here for the same reason, to help and support so we can have a better understanding of this most confounding disease ! All of the very best to you.
Dana
Forums
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: How often to monitor smoldering myeloma?
Hi,
I go to UAMS-MIRT in Little Rock. I have SPEP, etc. every 2 months and Zometa infusions 4 mg every 3rd month, UPEP every 4th month locally at my Oncologists. I have yearly BMB, Pet scans, bone denisty tests, Blood supply MRI , MRI with contrast at UAMS and if every thing is ok than I smolder on hopefully forever!
I go to UAMS-MIRT in Little Rock. I have SPEP, etc. every 2 months and Zometa infusions 4 mg every 3rd month, UPEP every 4th month locally at my Oncologists. I have yearly BMB, Pet scans, bone denisty tests, Blood supply MRI , MRI with contrast at UAMS and if every thing is ok than I smolder on hopefully forever!
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keithvirgin
Re: How often to monitor smoldering myeloma?
Hey Keithvirgin,
Thanks for that info ! Much appreciated. Do you have bone involvement, (low bone density or lesion activity?) Is that why you are receiving 4mg of Zometa every 3 months?
Best,
Dana
Thanks for that info ! Much appreciated. Do you have bone involvement, (low bone density or lesion activity?) Is that why you are receiving 4mg of Zometa every 3 months?
Best,
Dana
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DanaH - Who do you know with myeloma?: Myself, SMM as of 1/2012
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 54
Re: How often to monitor smoldering myeloma?
Yes I have low bone density, and thankfully no lesions! Hope you the best and hang in there.
Keith
Keith
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keithvirgin
Re: How often to monitor smoldering myeloma?
I guess every doctor monitors differently. Labs once a year. BMB every 5 years. I guess my hot pepper & garlic diet is warding off more then just my spouse..lol
Re: How often to monitor smoldering myeloma?
Jaksix wrote:
> I have been smoldering for 9 months. I see Dr. tricot every 3 months. I
> have blood work and 24 hour urine every 3 months. BMB once a year. PET
> alternated with MRI every 3 months. When I have my BMB I done have any
> scans. I have IGA Lambda, 10% plasma cells, bones are ok, Oligosectetory,
> hiding M-spike, abnormal chromosomes, 13q, 4;14, 4p6.3, 1(1q21). If you
> are high risk, I would not want to go any longer than 3 months in between
> checks. I don't want treatment while I am smoldering, but don't want too
> wait until kidney failure!
I am smoldering and have the 24 hour urine test and blood tests every 3 months.
Jaksix, when you say you are oligiosecretory and have a "hiding m-spike" do you mean your m-spike is just a trace/not detectable or is it just very small? What level is it if you don't mind me asking?
> I have been smoldering for 9 months. I see Dr. tricot every 3 months. I
> have blood work and 24 hour urine every 3 months. BMB once a year. PET
> alternated with MRI every 3 months. When I have my BMB I done have any
> scans. I have IGA Lambda, 10% plasma cells, bones are ok, Oligosectetory,
> hiding M-spike, abnormal chromosomes, 13q, 4;14, 4p6.3, 1(1q21). If you
> are high risk, I would not want to go any longer than 3 months in between
> checks. I don't want treatment while I am smoldering, but don't want too
> wait until kidney failure!
I am smoldering and have the 24 hour urine test and blood tests every 3 months.
Jaksix, when you say you are oligiosecretory and have a "hiding m-spike" do you mean your m-spike is just a trace/not detectable or is it just very small? What level is it if you don't mind me asking?
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: How often to monitor smoldering myeloma?
In 2007 and 2008 my m-spike was 0.7. I am IgA Lambda. My ratio was normal until 1 year ago. At the same time my m-spike became undetectable. "Not measurable because it is in the beta globulin fraction". My light chain ratio is below normal and is slowly dropping, now 0.11. My IGA has gone from 800 to 1144. My IGG is dropping and is 624. Having one high and one below normal is not good. My FISH was normal the until 2 months ago. I have abnormalities in 4p16.3, 1p32, 13q32, 11q13, 14q32. My hematologist said that we will have to follow the ratio closely, since the m-spike is "hiding". It is interesting to watch things change and evolve as the chromosomes have mutated. If your m-spike is very low or undetectable and everything else is changing, you can't rely on following an m-spike to track progression.
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Jaksix
Re: How often to monitor smoldering myeloma?
NIH monitors mgus/smoldering myeloma once a year.
http://clinicaltrials.gov/show/NCT01109407
http://clinicaltrials.gov/show/NCT01109407
Re: How often to monitor smoldering myeloma?
Jaksix wrote:
> In 2007 and 2008 my m-spike was 0.7. I am IgA Lambda. My ratio was normal
> until 1 year ago. At the same time my m-spike became undetectable.
> "Not measurable because it is in the beta globulin fraction". My
> light chain ratio is below normal and is slowly dropping, now 0.11. My IGA
> has gone from 800 to 1144. My IGG is dropping and is 624. Having one high
> and one below normal is not good. My FISH was normal the until 2 months
> ago. I have abnormalities in 4p16.3, 1p32, 13q32, 11q13, 14q32. My
> hematologist said that we will have to follow the ratio closely, since the
> m-spike is "hiding". It is interesting to watch things change
> and evolve as the chromosomes have mutated. If your m-spike is very low or
> undetectable and everything else is changing, you can't rely on following
> an m-spike to track progression.
Hi Jaksix,
Thank you so much for sharing more of your story. That's really interesting you started with a .7 m-spike, and then you developed an abnormal ratio and your m-spike became undetectable. This disease is so confusing...good to know if other things are changing you can't necessarily follow just the m-spike. As far as your FISH abnormalities - are those translocations, deletions, gains...?? I have deletion 13 (monosomy), t(11;14), and 14q32(IGH sep). Still trying to understand all that.
Take care,
Elizabeth
> In 2007 and 2008 my m-spike was 0.7. I am IgA Lambda. My ratio was normal
> until 1 year ago. At the same time my m-spike became undetectable.
> "Not measurable because it is in the beta globulin fraction". My
> light chain ratio is below normal and is slowly dropping, now 0.11. My IGA
> has gone from 800 to 1144. My IGG is dropping and is 624. Having one high
> and one below normal is not good. My FISH was normal the until 2 months
> ago. I have abnormalities in 4p16.3, 1p32, 13q32, 11q13, 14q32. My
> hematologist said that we will have to follow the ratio closely, since the
> m-spike is "hiding". It is interesting to watch things change
> and evolve as the chromosomes have mutated. If your m-spike is very low or
> undetectable and everything else is changing, you can't rely on following
> an m-spike to track progression.
Hi Jaksix,
Thank you so much for sharing more of your story. That's really interesting you started with a .7 m-spike, and then you developed an abnormal ratio and your m-spike became undetectable. This disease is so confusing...good to know if other things are changing you can't necessarily follow just the m-spike. As far as your FISH abnormalities - are those translocations, deletions, gains...?? I have deletion 13 (monosomy), t(11;14), and 14q32(IGH sep). Still trying to understand all that.
Take care,
Elizabeth
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
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