My story: A neurologist treating me for chronic migraines said to me in Dec 2010: "Now lets talk about your bloodwork." In that same conversation, he talked about concern over a Multiple Myeloma diagnosis. Since then I have been on a search for information.
My initial M-spike (IgG) was 0.55. The latest was 1.1. At each 6 month testing interval it has climbed: from 0.55 to 0.71 to 0.80 to 0.92 to 1.1 last month. My initial BMB in April 2011 was less than 5% plasma cells. In July 2012, my BMB was 10% plasma cells with 91% of those cells classified as "abnormal." Seems like I might be in a "progressing" mode.
My Beta-2 Microglobulin has been slightly high (2.83 and 2.94). My urea nitrogen is high on every test; creatine high on all but one test, and GFR below 60 on all but one test. Skeletal survey showed possible lytic lesions on my skull, but CT of the area said these were more likely venous lakes. Couldn't rule out lytic lesions, but more likely they are not. My free light chains are out of whack (Kappa in the normal range but Lambda in the 141-176 range; ratio at .05 and .06). I have peripheral neurophathy in my hands, especially at night. Not sure if it is related to the MGUS, but both hands go completely to sleep -- so severely that it often wakes me up.
3 burning questions that I haven't been able to find answers to: (1) when do I shift from MGUS, which is clearly what I started with, to SMM? (2) at what point do my abnormal kidney values (none seem to be alarmingly out of normal range, but several of the ranges are out of normal) indicate the start of kidney damage? and (3) are my free light chain results pretty typical or in the particularly troublesome range? Compared to the reference values (5.71-26.30 for Lambda free light chains and 0.26-1.65 for the ratio), they seem pretty abnormal, but what do I know?
I'm new to posting, but like the discussion threads and support I see from patients, family members and doctors, so decided to join in.
Forums
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
I enrolled in the NIH natural history study, which is where the July results come from. Also not sure if I should be concerned about the fact that my BMB results went from <5% to 10% in a year's time. Is this normal? Do these results vary (e.g., go up and down) over time?
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
Doctors at NIH should have explained where you're at. Seek out a Myeloma specialist in your area.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Always looking for answers...
They said my results are still "consistent" with MGUS because my M-spike is still pretty low, but I got the impression I'm close to a SMM line. I wasn't expecting the BMB jump. I don't think they were either.
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
In order to qualify for MGUS, plasma cells need to be below 10%. At least that is how I understand it!
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: Always looking for answers...
Hi MissMolly, perhaps one of the doctors will comment here, but it is well known that myeloma can be a patchy disease in the way it infiltrates the bone marrow. Thus, it is possible that a BMB elsewhere in your body would show little or no infiltration. One BMB is not definitive.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Always looking for answers...
I do not know if I would focus too much on whether you meeting the definition of being on one side or the other between MGUS or SMM. I look at my lab numbers and which way they are trending, and what my Oncologist says them mean for my overall health.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Always looking for answers...
I think what concerns me is what seems like a dramatic change in my BMB percentage. The M-spike numbers, while rising, are not alarming even now. The doctors at NIH indicated they would start being concerned when that number hits 1.5 (which given the move in just over a year from .55 to 1.1 seems like it will be within the next year), but everything I've read indicates the real number to watch is 3.0 and I'm not close to that yet. However, the BMB now being at 10% with an overwhelming number of those being classified as "abnormal" was unexpected. Compared to other stories on this forum (which I love, by the way -- thank you to all of you who contribute and participate), that is still low and I am thankful for that. But it now has my full attention... I have significant DDD for my age (have already had a fusion in my cervical spine and may not be far from one in my lumbar spine) and pain everywhere. Lots of headaches; tired all the time. My skeletal survey has not been repeated and I have not had a PET or skeletal MRI. Starting to wonder if there would be changes there as well. I'm sure everyone goes through this stuff.....
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
Are you a patient at a major myeloma center? I know you entrolled in the Natural History study, but where you are seen in the interim?
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: Always looking for answers...
I'm in the military and am currently assigned to Hematology/Oncolody at Walter Reed Military Medical Center. This is my second posting since diagnosis, so consistency of providers is an issue, but there isn't much I can do about that -- I move or they move. At my last assignment, I had the head of the department as my doctor. Now I have a resident, so I'm glad to have the NIH connection too.
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MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
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