Hello everyone, I am a 26 years old female from Italy. Five months ago I was diagnosed with Stage 1A multiple myeloma, which is rare considering my age.
But I don't understand my diagnosis. What does it mean, Stage 1A? Is this stage known as smoldering myeloma, or something else?
Please help me understand this because my doctor only said it is nothing to be afraid because you have small amount of plasma cells and I couldn't find information on google about this stage.
P.S: Sorry for my bad English.
Forums
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
It sounds like they are using the older Durie-Salmon Staging system. See:
http://en.wikipedia.org/wiki/Multiple_myeloma
The "A" in stage "1A" means that you have normal renal (kidney) function based on your creatinine level, which is a good thing.
It's kind of hard to equate Stage 1A to smoldering myeloma or MGUS, but it is very likely that you are at one of these earlier, benign stages. You would need to know your M-Spike and plasma level percentage from your bone marrow biopsy to figure out if you are MGUS or Smoldering.
Being Stage 1A rules out the C, R and A in the CRAB criteria for figuring out if you are symptomatic or not: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions. This is a good thing that you don't have the C, R and A.
However, Durie-Salmon Stage 1A is a bit "loose" on the subject of bone damage (the B in CRAB). I assume that there was no bone damage or a "solitary plasmacytoma" (a single multiple myeloma tumor on your bone) mentioned from your bone imaging results? If there is no solitary plasmacytoma present, you are either MGUS or Smoldering...again depending on your M-Spike (paraprotein level) and plasma level % from your bone marrow biopsy.
With MGUS or smoldering myeloma (very likely it is one of these two), you could go through your entire life without ever needing treatment or feeling any worse for the diagnosis. So, try not to worry too much
http://en.wikipedia.org/wiki/Multiple_myeloma
The "A" in stage "1A" means that you have normal renal (kidney) function based on your creatinine level, which is a good thing.
It's kind of hard to equate Stage 1A to smoldering myeloma or MGUS, but it is very likely that you are at one of these earlier, benign stages. You would need to know your M-Spike and plasma level percentage from your bone marrow biopsy to figure out if you are MGUS or Smoldering.
Being Stage 1A rules out the C, R and A in the CRAB criteria for figuring out if you are symptomatic or not: C = Calcium (elevated), R = Renal failure, A = Anemia, B = Bone lesions. This is a good thing that you don't have the C, R and A.
However, Durie-Salmon Stage 1A is a bit "loose" on the subject of bone damage (the B in CRAB). I assume that there was no bone damage or a "solitary plasmacytoma" (a single multiple myeloma tumor on your bone) mentioned from your bone imaging results? If there is no solitary plasmacytoma present, you are either MGUS or Smoldering...again depending on your M-Spike (paraprotein level) and plasma level % from your bone marrow biopsy.
With MGUS or smoldering myeloma (very likely it is one of these two), you could go through your entire life without ever needing treatment or feeling any worse for the diagnosis. So, try not to worry too much
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Thank you very much for the information. It is clear now that my doctors have used Durie-Salmon system, but it's very confusing and i don't understand it.
My S-total proteines are 86,0 g/L, gamma zone is 28,1%, band monoclonal component is 13,3 g/L.
s-beta 2 microglobuline is 1,8 mg/L and S-CRP is 3,5 mg/L.
S-IgG=24,070g/L ; P-IgA=1,997g/L ; P-IgM=0,901g/L
Free light chains: S-Ig/L k is 12,6 mg/L ; S-Ig/L l is 13,2 mg/L and kappa/lambda is 0,955
Also my BMB is like Chinese, i only understand that plasmacells (CD138+ CD38++) is 1% from 0.01-0.5
I have anemia but my doctor says that it is responsive to the marzial therapy.
I don't understand anything of this to classify me as Stage 1a of multiple myeloma. I'm not depressed or anything like that, but I only want to understand, to know .
My S-total proteines are 86,0 g/L, gamma zone is 28,1%, band monoclonal component is 13,3 g/L.
s-beta 2 microglobuline is 1,8 mg/L and S-CRP is 3,5 mg/L.
S-IgG=24,070g/L ; P-IgA=1,997g/L ; P-IgM=0,901g/L
Free light chains: S-Ig/L k is 12,6 mg/L ; S-Ig/L l is 13,2 mg/L and kappa/lambda is 0,955
Also my BMB is like Chinese, i only understand that plasmacells (CD138+ CD38++) is 1% from 0.01-0.5
I have anemia but my doctor says that it is responsive to the marzial therapy.
I don't understand anything of this to classify me as Stage 1a of multiple myeloma. I'm not depressed or anything like that, but I only want to understand, to know .
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ana1987
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Yeah, this stuff is very confusing, isn't it? You didn't provide all the lab info to match up for a Durie-Salmon staging, BUT....
You basically have:
M-Spike of 13.3 g/L= 1.33 g/dL.
By itself, the above M-Spike means you have a monoclonal gammopathy (anything greater than zero is not normal). But this is a very SMALL M-spike.
Your free light chains are:
Kappa =12.6 mg/L = 1.26 mg/dL, which is normal
Lambda = 13.2 mg/L = 1.32 mg/dL, which is normal
Kappa/Lambda = 0.955, which is normal
Your BMB plasma cell percentage is 1% (the plasma cell percentage may also be called out at the end of the report in the diagnosis or comments section?). This is also normal, which is great.
So, by definition, with an M-Spike < 3 g/dL and your BMB plasma cell percentage at less than 10%, you have MGUS, assuming the anemia is not caused by the MGUS , and you have a normal calcium level, no bone lesions and good kidney function.
I am assuming you meant "malarial therapy" not "marzial therapy" that is causing the anemia?
If you are going to have any diagnosis related to multiple myeloma, MGUS is the best one to have. You have a very low chance of it ever developing into symptomatic multiple myeloma (1%/year chance of progressing) and you shouldn't normally experience any complications from it.
Ciao,
You basically have:
M-Spike of 13.3 g/L= 1.33 g/dL.
By itself, the above M-Spike means you have a monoclonal gammopathy (anything greater than zero is not normal). But this is a very SMALL M-spike.
Your free light chains are:
Kappa =12.6 mg/L = 1.26 mg/dL, which is normal
Lambda = 13.2 mg/L = 1.32 mg/dL, which is normal
Kappa/Lambda = 0.955, which is normal
Your BMB plasma cell percentage is 1% (the plasma cell percentage may also be called out at the end of the report in the diagnosis or comments section?). This is also normal, which is great.
So, by definition, with an M-Spike < 3 g/dL and your BMB plasma cell percentage at less than 10%, you have MGUS, assuming the anemia is not caused by the MGUS , and you have a normal calcium level, no bone lesions and good kidney function.
I am assuming you meant "malarial therapy" not "marzial therapy" that is causing the anemia?
If you are going to have any diagnosis related to multiple myeloma, MGUS is the best one to have. You have a very low chance of it ever developing into symptomatic multiple myeloma (1%/year chance of progressing) and you shouldn't normally experience any complications from it.
Ciao,
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Thank you again. So i am MGUS, but MGUS and Stage 1A multiple myeloma are not the same? (more confusing)
I was doing blood tests to know the cause of my low hemoglobin and I came through this (Stage IA of multiple myeloma)
'Terapia marziale' (I don't know the English term) means that my anemia can regulate with iron pills.
Bye,
I was doing blood tests to know the cause of my low hemoglobin and I came through this (Stage IA of multiple myeloma)
'Terapia marziale' (I don't know the English term) means that my anemia can regulate with iron pills.
Bye,
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ana1987
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
People really don't use the Durie-Salmon staging system that much any more, at least to my knowledge (maybe they still use it in Europe?).
Technically, MGUS or Smoldering Myeloma or a condition known as "Solitary Plasmacytoma" could all be classified as Stage 1A under Durie-Salmon (these three conditions are very different, which is why Durie-Salmon isn't that great of a staging system). But, you've got MGUS and it will be easy to find information about that designation online (and from this forum).
I'm not at all qualified to say if your particular anemia is part of your MGUS or not. Somebody else or a doctor will need to comment on that. But that is one thing that you should definitely verify with a multiple myeloma specialist...or somebody on this forum that really understands this kind of anemia.
Technically, MGUS or Smoldering Myeloma or a condition known as "Solitary Plasmacytoma" could all be classified as Stage 1A under Durie-Salmon (these three conditions are very different, which is why Durie-Salmon isn't that great of a staging system). But, you've got MGUS and it will be easy to find information about that designation online (and from this forum).
I'm not at all qualified to say if your particular anemia is part of your MGUS or not. Somebody else or a doctor will need to comment on that. But that is one thing that you should definitely verify with a multiple myeloma specialist...or somebody on this forum that really understands this kind of anemia.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Last summer my M spike IgG was at 0.400 g/dL at which time my bone marrow biopsy (BMB) indicated 7% total plasma cell count in marrow (but no clonal in sample) - high risk MGUS based on above 5% plasma cell total in marrow.
Then just now my M spike is near the same but my plasma in marrow per last week's BMB is at 100%.
Hopefully my plasma % in marrow didn't change much since last July, but simply the spot collected recently may have contained more cells than that of last year (per each of the oncologists I've seen, they have all stated that each BMB may pickup a hot or weak spot and also clonal or normal cells, it's sort of a point and shoot while blind process, though the new myeloma center which I'm visiting relies on MRIs to attempt to locate areas which may be undergoing change and thus provide a better marrow sample.
This time my BMB sample indicated CD56, CD117 positive aberrant cells.
My point is in this thread's that:
I see that ana1987 had an M-spike more than 2x my M spike, but yet a very "normal" plasma cell % count per BMB (2%), which is a good thing.
Where my M spike is smaller, but yet I'm now at a 10% plasma cell percentage and classified as smoldering myeloma.
I wish I had a larger M spike and normal plasma cell percentage (low risk MGUS vs smoldering myeloma) - such a strange disease. Congrats ana1987 on the normal BMB result.
Then just now my M spike is near the same but my plasma in marrow per last week's BMB is at 100%.
Hopefully my plasma % in marrow didn't change much since last July, but simply the spot collected recently may have contained more cells than that of last year (per each of the oncologists I've seen, they have all stated that each BMB may pickup a hot or weak spot and also clonal or normal cells, it's sort of a point and shoot while blind process, though the new myeloma center which I'm visiting relies on MRIs to attempt to locate areas which may be undergoing change and thus provide a better marrow sample.
This time my BMB sample indicated CD56, CD117 positive aberrant cells.
My point is in this thread's that:
I see that ana1987 had an M-spike more than 2x my M spike, but yet a very "normal" plasma cell % count per BMB (2%), which is a good thing.
Where my M spike is smaller, but yet I'm now at a 10% plasma cell percentage and classified as smoldering myeloma.
I wish I had a larger M spike and normal plasma cell percentage (low risk MGUS vs smoldering myeloma) - such a strange disease. Congrats ana1987 on the normal BMB result.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Thank you very much pinball.
I really hope your plasma cell doesn't change (getting more high). Don't think much of it, take it easy
I wish you all the best.
I really hope your plasma cell doesn't change (getting more high). Don't think much of it, take it easy
I wish you all the best.
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ana1987
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
Thank you Multibilly, you know a lot of this stuff.
I guess Europe is still with the antique.
In 3 weeks I have my appointment with my doctor and I'm going to ask a lot of questions.
I guess Europe is still with the antique.
In 3 weeks I have my appointment with my doctor and I'm going to ask a lot of questions.
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ana1987
Re: Does Stage 1A multiple myeloma = smoldering myeloma?
BTW, I think the kind of anemia you are describing is what is known as "sideropenic anemia"?
http://medical-dictionary.thefreedictionary.com/sideropenic+anemia
I believe the kind of anemia that is typically caused by multiple myeloma is what is known as "myelophthisic anemia"?
http://en.wikipedia.org/wiki/Myelophthisic_anemia
Again, I would suggest being certain that your anemia isn't linked to your MGUS (it probably isn't, given you have such low numbers).
I'm not a doc, so these are only guesses by a layman...
http://medical-dictionary.thefreedictionary.com/sideropenic+anemia
I believe the kind of anemia that is typically caused by multiple myeloma is what is known as "myelophthisic anemia"?
http://en.wikipedia.org/wiki/Myelophthisic_anemia
Again, I would suggest being certain that your anemia isn't linked to your MGUS (it probably isn't, given you have such low numbers).
I'm not a doc, so these are only guesses by a layman...
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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