Hello,
In August this year my husband went to his doctor regarding the stress fractures in his back. He has always had back issues from running and karate. He is in very good shape otherwise. After going and having a blood work up, urine analysis, etc., there was an M-spike. It wasn't huge, but the doctor wanted him to see a hematologist / oncologist to make sure everything was okay.
My husband had another urine test which was normal. Since this time in August he has had all normal urine tests.
However, he was diagnosed with high-risk MGUS and low-risk smoldering. I was a little confused about why it wasn't just MGUS. I am very concerned about this progression. The doctor is very thorough and wants to see him every 3 months to watch carefully.
Here are his results:
8% plasma cells (which is a little bit more than normal); one biopsy he had 5-10
Free kappa is 160
IgA 432 (normal is up to 400 - we were told minimally above)
CRAB:
Calcium 9.5, albumin normal
Creatine (kidney) is normal
No anemia
No bone lesions
chromosome abnormality - monosomy 13 (pretty common in plasma cell abnormality)
Skeletal x-ray was normal
He also had an MRI due to a very small lucency which ended up being nothing but a vein. MRI was totally normal.
He has had two more appointments and his blood work hasn't changed.
I am worried because his doctor is making us feel like he will have multiple myeloma and it's a matter of time. Should we get a second opinion?
I appreciate any information you can give me.
Many thanks
Forums
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PJD143 - Name: PJD143
- Who do you know with myeloma?: learning more as I go along
- When were you/they diagnosed?: My husband was diagnosed in August 2016
- Age at diagnosis: 57
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Hi PJD143,
You don't say what his serum lambda free light chain value or kappa / lambda serum free light chain ratio is. Please include the units of measure in your response when you refer to any lab values. These additional numbers will provide a key piece of information.
He is probably classified as being high/intermediate-risk MGUS due to his MGUS-type being IgA and having a skewed set of free light chain values. If his IgA M-spike is also > 1.5 g/dL, then he would be diagnosed as having high-risk MGUS, according to the Mayo Clinic risk classification for MGUS. Unfortunately, IgA-type MGUS does have a higher risk of transforming into multiple myeloma than does IgG-type MGUS, but it is certainly not a given that he will develop symptomatic multiple myeloma. Getting tested every 3 months for the coming year or so seems prudent. The doctor may back off on this schedule if his numbers remain stable for awhile.
Regarding monosomy 13 (del 13q), I suggest you read this article:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
Also, has he had a DEXA scan to establish his bone density and to see if osteopenia or osteoporosis might be a contributing cause to his recent fractures?
You don't say what his serum lambda free light chain value or kappa / lambda serum free light chain ratio is. Please include the units of measure in your response when you refer to any lab values. These additional numbers will provide a key piece of information.
He is probably classified as being high/intermediate-risk MGUS due to his MGUS-type being IgA and having a skewed set of free light chain values. If his IgA M-spike is also > 1.5 g/dL, then he would be diagnosed as having high-risk MGUS, according to the Mayo Clinic risk classification for MGUS. Unfortunately, IgA-type MGUS does have a higher risk of transforming into multiple myeloma than does IgG-type MGUS, but it is certainly not a given that he will develop symptomatic multiple myeloma. Getting tested every 3 months for the coming year or so seems prudent. The doctor may back off on this schedule if his numbers remain stable for awhile.
Regarding monosomy 13 (del 13q), I suggest you read this article:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
Also, has he had a DEXA scan to establish his bone density and to see if osteopenia or osteoporosis might be a contributing cause to his recent fractures?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Hello,
Thank you for your response. Forgive for me for not understanding all the test results, maybe not giving enough information.
Free kappa light chain 23.7
I am not sure about conversion. I believe however this may be on the high side.
How do I convert these numbers? This is all the information I received. Also I was never given the M-spike numbers.
His IgA 432 I was told that normal is 400 and he was minimally above.
IgG normal
He had the full skeletal scan and it was normal.
MRI normal/
He does have some stress fractures (however he works out and pushes himself). According to the doctor he has beginning signs of osteopenia, which will eventually be osteoperosis.
My biggest concern is that the percentage of this evolving (smoldering) is 10% per year. MGUS on the other hand is 1% per year. This is a very scary prognosis especially for someone who doesn't understand all of these numbers.
Thank you for your response. Forgive for me for not understanding all the test results, maybe not giving enough information.
Free kappa light chain 23.7
I am not sure about conversion. I believe however this may be on the high side.
How do I convert these numbers? This is all the information I received. Also I was never given the M-spike numbers.
His IgA 432 I was told that normal is 400 and he was minimally above.
IgG normal
He had the full skeletal scan and it was normal.
MRI normal/
He does have some stress fractures (however he works out and pushes himself). According to the doctor he has beginning signs of osteopenia, which will eventually be osteoperosis.
My biggest concern is that the percentage of this evolving (smoldering) is 10% per year. MGUS on the other hand is 1% per year. This is a very scary prognosis especially for someone who doesn't understand all of these numbers.
-
PJD143 - Name: PJD143
- Who do you know with myeloma?: learning more as I go along
- When were you/they diagnosed?: My husband was diagnosed in August 2016
- Age at diagnosis: 57
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Hi PJD143,
Remember that everyone is a snowflake when it comes to these diseases and their risk of progression. No two patients are alike. So there's no predicting when a specific MGUS or smoldering patient may transform into having multiple myeloma - if ever.
His IgA m-spike must be quite small if his IgA level is only 432 mg/dL - which is good news.
Technically, his diagnosis appears to be MGUS based on everything you've shared here.
Remember that everyone is a snowflake when it comes to these diseases and their risk of progression. No two patients are alike. So there's no predicting when a specific MGUS or smoldering patient may transform into having multiple myeloma - if ever.
His IgA m-spike must be quite small if his IgA level is only 432 mg/dL - which is good news.
Technically, his diagnosis appears to be MGUS based on everything you've shared here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Thank you for your response.
I did read the article. However, it was a little over my head. I am trying to understand the monosomy 13 chromosome with all of my husband's other blood work. I did note that some articles that I have read previously said there is a link between this chromosome and progression to multiple myeloma. However, I was under the impression with MGUS that the percentage progression to multiple myeloma was much lower. Does this increase my husband's chances to multiple myeloma due to this monosomy 13?
According to my previous question you mentioned that your opinion was high-risk / intermediate-risk MGUS. I am concerned about this progression.
Many thanks. I appreciate your posts very much. Often I get caught up with all that I read, and I feel so apprehensive about what the future may hold.
I did read the article. However, it was a little over my head. I am trying to understand the monosomy 13 chromosome with all of my husband's other blood work. I did note that some articles that I have read previously said there is a link between this chromosome and progression to multiple myeloma. However, I was under the impression with MGUS that the percentage progression to multiple myeloma was much lower. Does this increase my husband's chances to multiple myeloma due to this monosomy 13?
According to my previous question you mentioned that your opinion was high-risk / intermediate-risk MGUS. I am concerned about this progression.
Many thanks. I appreciate your posts very much. Often I get caught up with all that I read, and I feel so apprehensive about what the future may hold.
-
PJD143 - Name: PJD143
- Who do you know with myeloma?: learning more as I go along
- When were you/they diagnosed?: My husband was diagnosed in August 2016
- Age at diagnosis: 57
Re: High-risk MGUS, low-risk smoldering - cause for worry?
The isolated occurrence of monosomy 13 is fairly common and is considered to be a "standard risk" mutation in smoldering patients.
See Table 2 in the article I mentioned before:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
Per the article, "monosomy 13/del(13q) had no impact on risk of progression".
See Table 2 in the article I mentioned before:
https://myelomabeacon.org/forum/article-about-cytogenetics-chromosomal-abnormalities-t6271.html
Per the article, "monosomy 13/del(13q) had no impact on risk of progression".
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Today we went to see the doctor for my husband, In the past few visits they told us it was high-end MGUS / low-risk smoldering.
So we asked what was different from previous visit. She said that all the blood work stayed the same. Maybe very little elevation but nothing significant.
The biopsy was between 10-20%, which was one of the smoldering characteristics, so she is now classifying him smoldering.
His M-spike on the first visit was slight, then after when the second test was done it showed no M-spike. The 24 hour urine was normal.
Does the smoldering diagnosis sound right? She said it was one of the criteria for smoldering then he is considered at that stage.
The doctor did say that she was very very overly cautious.
So we asked what was different from previous visit. She said that all the blood work stayed the same. Maybe very little elevation but nothing significant.
The biopsy was between 10-20%, which was one of the smoldering characteristics, so she is now classifying him smoldering.
His M-spike on the first visit was slight, then after when the second test was done it showed no M-spike. The 24 hour urine was normal.
Does the smoldering diagnosis sound right? She said it was one of the criteria for smoldering then he is considered at that stage.
The doctor did say that she was very very overly cautious.
-
PJD143 - Name: PJD143
- Who do you know with myeloma?: learning more as I go along
- When were you/they diagnosed?: My husband was diagnosed in August 2016
- Age at diagnosis: 57
Re: High-risk MGUS, low-risk smoldering - cause for worry?
PJD,
Yes, a diagnosis of smoldering myeloma seems accurate. By definition, if his clonal bone marrow plasma cell percentage is >= 10%, then the diagnosis is smoldering myeloma and not MGUS. If he were to develop any of the following CRAB or myeloma defining events, then his diagnosis would become symptomatic multiple myeloma. My clonal bone marrow plasma cell percentage is 11% and that is what put me over the edge from an MGUS diagnosis to a smoldering multiple myeloma diagnosis.
Since he has little or no m-spike, you should also really keep an eye on the serum free light chain numbers. The next time you go in, you should ask for your kappa and lambda free light chain numbers and make sure that they include the units of measure (mg/dL, mg/L, etc).
CRAB:
*Hypercalcemia: serum calcium >0.25 mmol/L (>1mg/dL) higher than the upper limit of normal or >2.75 mmol/L (>11mg/dL)
*Renal insufficiency: creatinine clearance <40 mL per minute or serum creatinine >177µmol/L (>2mg/dL)
*Anemia: hemoglobin value of >20g/L below the lowest limit of normal, or a hemoglobin value <100g/L
*Bone lesions: one or more osteolytic lesion on skeletal radiography, CT, or PET/CT. If bone marrow has <10% clonal plasma cells, more than one bone lesion is required to distinguish from solitary plasmacytoma with minimal marrow involvement
MYELOMA DEFINING EVENTS:
*60% or greater clonal plasma cells on bone marrow examination
*Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved light chain is at least 100mg/L (a patient’s “involved” free light chain—either kappa or lambda—is the one that is above the normal reference range; the “uninvolved” free light chain is the one that is typically in, or below, the normal range)
*More than one focal lesion on MRI that is at least 5mm or greater in size.
Yes, a diagnosis of smoldering myeloma seems accurate. By definition, if his clonal bone marrow plasma cell percentage is >= 10%, then the diagnosis is smoldering myeloma and not MGUS. If he were to develop any of the following CRAB or myeloma defining events, then his diagnosis would become symptomatic multiple myeloma. My clonal bone marrow plasma cell percentage is 11% and that is what put me over the edge from an MGUS diagnosis to a smoldering multiple myeloma diagnosis.
Since he has little or no m-spike, you should also really keep an eye on the serum free light chain numbers. The next time you go in, you should ask for your kappa and lambda free light chain numbers and make sure that they include the units of measure (mg/dL, mg/L, etc).
CRAB:
*Hypercalcemia: serum calcium >0.25 mmol/L (>1mg/dL) higher than the upper limit of normal or >2.75 mmol/L (>11mg/dL)
*Renal insufficiency: creatinine clearance <40 mL per minute or serum creatinine >177µmol/L (>2mg/dL)
*Anemia: hemoglobin value of >20g/L below the lowest limit of normal, or a hemoglobin value <100g/L
*Bone lesions: one or more osteolytic lesion on skeletal radiography, CT, or PET/CT. If bone marrow has <10% clonal plasma cells, more than one bone lesion is required to distinguish from solitary plasmacytoma with minimal marrow involvement
MYELOMA DEFINING EVENTS:
*60% or greater clonal plasma cells on bone marrow examination
*Serum involved / uninvolved free light chain ratio of 100 or greater, provided the absolute level of the involved light chain is at least 100mg/L (a patient’s “involved” free light chain—either kappa or lambda—is the one that is above the normal reference range; the “uninvolved” free light chain is the one that is typically in, or below, the normal range)
*More than one focal lesion on MRI that is at least 5mm or greater in size.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Thank you so much for this information. Here is some additional information:
8% plasma cells (which is a little bit more than normal); on biopsy he had 10-20%
Free kappa is 10.1, more free kappa than lambda
IgA 432 (normal is up to 400 - we were told minimally above); after third blood work, it went up slightly, nothing significant.
No CRAB:
Calcium 9.5
Albumin normal
Creatinine (kidney) is normal
No anemia
No bone lesions
Skeletal x-ray was normal
MRI normal
Does this change anything? Years ago it was anything over 20% plasma cells were the issue I thought.
The confusing part of this whole situation was that she told me it was grey and that everything else was good and that 10-20% number was the only thing.
I am sorry for asking so many questions, I have been very consumed by trying to get as much information as possible. I am not feeling as hopeful as I was before.
8% plasma cells (which is a little bit more than normal); on biopsy he had 10-20%
Free kappa is 10.1, more free kappa than lambda
IgA 432 (normal is up to 400 - we were told minimally above); after third blood work, it went up slightly, nothing significant.
No CRAB:
Calcium 9.5
Albumin normal
Creatinine (kidney) is normal
No anemia
No bone lesions
Skeletal x-ray was normal
MRI normal
Does this change anything? Years ago it was anything over 20% plasma cells were the issue I thought.
The confusing part of this whole situation was that she told me it was grey and that everything else was good and that 10-20% number was the only thing.
I am sorry for asking so many questions, I have been very consumed by trying to get as much information as possible. I am not feeling as hopeful as I was before.
-
PJD143 - Name: PJD143
- Who do you know with myeloma?: learning more as I go along
- When were you/they diagnosed?: My husband was diagnosed in August 2016
- Age at diagnosis: 57
Re: High-risk MGUS, low-risk smoldering - cause for worry?
Not sure where the 20 percent bone marrow plasma cell (BMPC) percentage figure came from.
The bone marrow plasma cell percentage cutoff between MGUS and smoldering multiple myeloma is 10 percent. But be clear that International Myeloma Working Group (IMWG) uses the CLONAL plasma cell percentage value of 10% as the cutoff between MGUS and myeloma, not the TOTAL plasma cell percentage.
So, you need to verify with your oncologist if the 10-20 percent bone marrow plasma cell percentage figure is a clonal or total plasma cell percentage.
Again, you should really get BOTH of your SERUM free light chain numbers (kappa and lambda), including the units of measure. You have mentioned a free light kappa value of 160, 23.7 and now 10.1 in your posts, so I'm not sure that you are reporting the same thing in all of your posts, or if you are using the same units of measure each time. It's important to know BOTH the kappa and lambda serum free light chain values (not just that one was more than the other), since their ratio is also important to understand.
Also, please don't confuse TOTAL serum light chain values with FREE serum light chain values, and don't include URINE free light chain values when you report SERUM free light chain values.
If you don't have printouts of all your lab results, you should be able to simply call the oncologist's office and request a copy (or they may also be reported online through a patient portal).
Once you post both the kappa and lambda free light chain values, folks on this forum will be able to comment more completely on your situation.
Lastly, to get a better handle on smoldering risk-of-progression stats, you may want to read through this forum thread:
"Risk of progression in smoldering multiple myeloma," (started Sep 13, 2014)
The bone marrow plasma cell percentage cutoff between MGUS and smoldering multiple myeloma is 10 percent. But be clear that International Myeloma Working Group (IMWG) uses the CLONAL plasma cell percentage value of 10% as the cutoff between MGUS and myeloma, not the TOTAL plasma cell percentage.
So, you need to verify with your oncologist if the 10-20 percent bone marrow plasma cell percentage figure is a clonal or total plasma cell percentage.
Again, you should really get BOTH of your SERUM free light chain numbers (kappa and lambda), including the units of measure. You have mentioned a free light kappa value of 160, 23.7 and now 10.1 in your posts, so I'm not sure that you are reporting the same thing in all of your posts, or if you are using the same units of measure each time. It's important to know BOTH the kappa and lambda serum free light chain values (not just that one was more than the other), since their ratio is also important to understand.
Also, please don't confuse TOTAL serum light chain values with FREE serum light chain values, and don't include URINE free light chain values when you report SERUM free light chain values.
If you don't have printouts of all your lab results, you should be able to simply call the oncologist's office and request a copy (or they may also be reported online through a patient portal).
Once you post both the kappa and lambda free light chain values, folks on this forum will be able to comment more completely on your situation.
Lastly, to get a better handle on smoldering risk-of-progression stats, you may want to read through this forum thread:
"Risk of progression in smoldering multiple myeloma," (started Sep 13, 2014)
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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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