My husband, 54, yesterday was told he has MGUS but, because of 2 areas on the skull xray (and a minor L1/L2 vertebrae wedge), he may have smoldering multiple myeloma and they want to do a bone marrow biopsy (BMB).
If the BMB shows greater than a 10% plasma cell percentage, then they will do a PET scan. If less than 10%, then no PET scan. I asked if a CT scan would show anything, and he said no.
The doctor says the M-spike is 1.0 g/dL (10 g/L) because one abnormal band was found - even though the tests say "no monoclonal proteins".
Blood Results:
Kappa free light chains - 93.33 (3.3-19.4) Abnormal
Lambda free light chains - 15.67 (5.7-26.3) Normal
Kappa / lambda ratio - 5.96 (0.26-1.65) Abnormal
No monoclonal proteins detect. One IgG kappa monoclonial protein migrating to the gamma region
IgG - 1751 mg/dl (694-1618) Abnormal
WBC - 4.2 k/cmm (4.5 - 10.8) Low
RBC - 4.26 (4.20 -5.50) Normal
Glucose - 122 mg/Hl (70-105) High
Mean Corp Volume - 98 (80-96) High
Urine Results:
No monoclonal proteins detected. Immunofixation studies revealed a free kappa and an IgG kappa monoclonal protein(s) migrating in the gamma region. Faint IgG monoclonal band in the beta region, with no light chain component detected. Immunofixation studies revealed one trace concentration band(s) migrating in the alpha-2 region which was/were of too low a concentration to definitively identify
September 2015 X-Rays:
2 ill-defined lucency seen posteriorly on the lateral view of the skull, these may be reflective of normal venous lakes however early punched out lesions cannot be excluded. A CT scan may be of benefit for further assessment.
Degenerative changes seen throughout the spine.
Mild anterior wedging is seen of the L1 and L2 vertebral bodies, age and cause indeterminate. Correlation with an MRI may be of benefit.
First, it is quite scary that the urine tests show a band in the gamma and a faint IgG band in the beta and a trace band in the alpha-2. Has anyone seen anything like that? I don't understand that.
My husband is quite healthy, though tired. By the way, these low WBC counts have been on 3 years of blood tests, but only now is he being tested for MGUS. All other blood work is normal.
Any suggestions would be quite appreciated!
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: New MGUS with 2 lucent areas on skull
Hello and welcome to the forum. I'm sorry you need to be here, but I'm glad you found us. I would totally agree that he needs a bone marrow biopsy. I would make sure this test gets done! Don't let it fall through the cracks.
It's totally normal to feel overwhelmed at this point, by the way. It DOES get better.
I'll be following along. Let us know what the results are! Good luck!
Tracy
It's totally normal to feel overwhelmed at this point, by the way. It DOES get better.
I'll be following along. Let us know what the results are! Good luck!
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: New MGUS with 2 lucent areas on skull
As a follow up to my previous post, my husband will be having a bone marrow aspiration on Oct 20. The oncologist will do a PET/CT scan ONLY if the plasma cell percentage is greater than 10 %. He mentioned something about a genetic test also.
I have called City of Hope and we can set up an appointment after the bone marrow aspiration. I would like a second opinion as to whether there is a concern about the 2 lucent areas on the skull and the minor wedge on the L1 and L2 vertebrae. City of Hope has myeloma specialists, so their expertise will be quite welcome.
I have read that if a person has one criteria on the CRAB (B=Bone), then the diagnosis is active myeloma. At this point he is considered MGUS because his blood work is still within the limits. However, I am wondering if he has the 'B=Bone' situation on CRAB.
Thanks!
I have called City of Hope and we can set up an appointment after the bone marrow aspiration. I would like a second opinion as to whether there is a concern about the 2 lucent areas on the skull and the minor wedge on the L1 and L2 vertebrae. City of Hope has myeloma specialists, so their expertise will be quite welcome.
I have read that if a person has one criteria on the CRAB (B=Bone), then the diagnosis is active myeloma. At this point he is considered MGUS because his blood work is still within the limits. However, I am wondering if he has the 'B=Bone' situation on CRAB.
Thanks!
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: New MGUS with 2 lucent areas on skull
My husbands bone marrow flow cytometry came back today with 10% polyclonal. The oncologist was confused as to why it was all polyclonal. Does anyone here know what that means?
However, the FISH came back:
Gain of chromosome 7 - 18% of nuclei
Gain of chromosome 9 - 6% of nuclei
Gain of TP53/17P - 19% of nuclei
Extra copy of CCND1 of 17% indicating a presence of chromosome 11 abnormality, most likely trisomy 11, a change known to occur in plasma cell neoplasms.
I am quite concerned because I read that the TP53 / 17P is high risk and poor prognosis to treatment . He has IgG kappa with 1.0 g/dl m spike. Oncologist now says he is 'smoldering myeloma' because of the 10% polyclonal and the abnormal genes.
In 2 weeks he will get a PET/CT to see if there are any bright spots involved with the 2 lucent ill-defined "possible venous lakes" on the skull xray. And the minor L1/L2 anterior wedge.
Has anyone else here had a polyclonal 'only' result with abnormal genes? Shouldn't there be some monoclonal?
I assume the results of the PET/CT will tell us if he is now advanced to myeloma ?
Thank you for any help ... or advice ... or well wishes ...
However, the FISH came back:
Gain of chromosome 7 - 18% of nuclei
Gain of chromosome 9 - 6% of nuclei
Gain of TP53/17P - 19% of nuclei
Extra copy of CCND1 of 17% indicating a presence of chromosome 11 abnormality, most likely trisomy 11, a change known to occur in plasma cell neoplasms.
I am quite concerned because I read that the TP53 / 17P is high risk and poor prognosis to treatment . He has IgG kappa with 1.0 g/dl m spike. Oncologist now says he is 'smoldering myeloma' because of the 10% polyclonal and the abnormal genes.
In 2 weeks he will get a PET/CT to see if there are any bright spots involved with the 2 lucent ill-defined "possible venous lakes" on the skull xray. And the minor L1/L2 anterior wedge.
Has anyone else here had a polyclonal 'only' result with abnormal genes? Shouldn't there be some monoclonal?
I assume the results of the PET/CT will tell us if he is now advanced to myeloma ?
Thank you for any help ... or advice ... or well wishes ...
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: New MGUS with 2 lucent areas on skull
Brandyjoco,
First off, I'm not a doc, so please verify everything I say with a doctor.
Is your husband's oncologist a myeloma specialist or simply an oncologist with some familiarity with multiple myeloma (there is a big difference)?
Excess polyclonal plasma cells can have many different causes and some of these causes can be transient. Excess polylconal plasma cells can be associated with hypergammaglobulinemia, infections, liver disease, and a host of other things.
Multiple myeloma is not spread evenly throughout one's bone marrow. So, you can easily have a bone marrow biopsy yield no multiple myeloma cells even in patients that have symptomatic multiple myeloma. It is therefore somewhat the luck of the draw as to whether the biopsy actually hits a pocket of disease that has monoclonal plasma cells present or not. But clearly, the biopsy did hit a pocket of excess polyclonal plasma cells.
You are right that that the TP53 gene that is found on the short arm of chromosome 17 (TP53/17p) is associated with high risk multiple myeloma. But it is a 17p DELETION and the associated LOSS of the TP53 gene, not a 17p GAIN that is a high risk mutation. So, don't fret about this.
Again, I'm not a doc, but the presence of any genetic abnormalities is not one of the factors used to distinguish smoldering multiple myeloma from MGUS or symptomatic multiple myeloma. Also, the rule about smoldering multiple myeloma being associated with >= 10% bone marrow plasma cells applies to monoclonal cells, not polyclonal cells. So, I'm a bit surprised that the doctor categorized your husband as having smoldering multiple myeloma based on those two findings.
Lastly, I'm wondering if this really is a monoclonal gammopathy or something else given everything you've said in this thread? I might therefore suggest a second opinion at another institution (which is probably always a good idea under any set of circumstances). Folks on the forum would be happy to make some suggestions of a specialist or two in southern California.
First off, I'm not a doc, so please verify everything I say with a doctor.
Is your husband's oncologist a myeloma specialist or simply an oncologist with some familiarity with multiple myeloma (there is a big difference)?
Excess polyclonal plasma cells can have many different causes and some of these causes can be transient. Excess polylconal plasma cells can be associated with hypergammaglobulinemia, infections, liver disease, and a host of other things.
Multiple myeloma is not spread evenly throughout one's bone marrow. So, you can easily have a bone marrow biopsy yield no multiple myeloma cells even in patients that have symptomatic multiple myeloma. It is therefore somewhat the luck of the draw as to whether the biopsy actually hits a pocket of disease that has monoclonal plasma cells present or not. But clearly, the biopsy did hit a pocket of excess polyclonal plasma cells.
You are right that that the TP53 gene that is found on the short arm of chromosome 17 (TP53/17p) is associated with high risk multiple myeloma. But it is a 17p DELETION and the associated LOSS of the TP53 gene, not a 17p GAIN that is a high risk mutation. So, don't fret about this.
Again, I'm not a doc, but the presence of any genetic abnormalities is not one of the factors used to distinguish smoldering multiple myeloma from MGUS or symptomatic multiple myeloma. Also, the rule about smoldering multiple myeloma being associated with >= 10% bone marrow plasma cells applies to monoclonal cells, not polyclonal cells. So, I'm a bit surprised that the doctor categorized your husband as having smoldering multiple myeloma based on those two findings.
Lastly, I'm wondering if this really is a monoclonal gammopathy or something else given everything you've said in this thread? I might therefore suggest a second opinion at another institution (which is probably always a good idea under any set of circumstances). Folks on the forum would be happy to make some suggestions of a specialist or two in southern California.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New MGUS with 2 lucent areas on skull
Since we are in S.Calif we are hoping to have a second opinion with Dr Berenson in N. Hollywood (2 hours in traffic) but well worth it.
I found some interesting articles on better prognostic outcomes for patients with a higher polyclonal percentage:
S Kumar et al, "Immunophenotyping in multiple myeloma and related plasma cell disorders," Best Practice & Research Clinical Haematology, Sep 2010 (full text of article at PubMed central)
Since I was concerned about the high risk involved with del(17p) I found some articles on how trisomies along with the high risk genes can actually offset the high risk and possibly place the patient into a 'standard risk' prognosis. Here is one article.
"High-Risk Myeloma Patients With Trisomies May Not Be High Risk After All," The Myeloma Beacon, Feb 15, 2012
I found some interesting articles on better prognostic outcomes for patients with a higher polyclonal percentage:
S Kumar et al, "Immunophenotyping in multiple myeloma and related plasma cell disorders," Best Practice & Research Clinical Haematology, Sep 2010 (full text of article at PubMed central)
It has been shown that the proportion of normal plasma cells in patients with plasma cell disorders is a powerful prognostic factor in all stages of disease as well as following therapy. Patients with MGUS and SMM, who have >5% phenotypically normal plasma cells, have a better outcome with lower rates of disease progression to symptomatic myeloma. In a series of 594 newly diagnosed multiple myeloma patients, uniformly treated on clinical trials, those with more than 5% normal plasma cells in the marrow (14% of patients) had favorable baseline clinical characteristics and a significantly lower frequency of high-risk cytogenetic abnormalities. These patients had a better response to therapy and longer progression-free and overall survival compared to the rest.
Since I was concerned about the high risk involved with del(17p) I found some articles on how trisomies along with the high risk genes can actually offset the high risk and possibly place the patient into a 'standard risk' prognosis. Here is one article.
"High-Risk Myeloma Patients With Trisomies May Not Be High Risk After All," The Myeloma Beacon, Feb 15, 2012
The researchers then divided the high-risk patients into two groups based on whether or not they had a trisomy. They found that high-risk patients with a trisomy had significantly longer median overall survival times (not yet reached) compared to high-risk patients without a trisomy (three years).
Moreover, they found that none of the trisomies were associated with better outcomes than the others.
The researchers then created a new high-risk patient group that only included high-risk patients without a trisomy. High-risk patients with a trisomy were reclassified as standard-risk patients, along with the original standard-risk patients.
They found that the new high-risk group had a median overall survival of three years. The median overall survival of the new standard-risk group was not reached at the time of follow-up.
According to the researchers, it is unclear why trisomies improve the survival outcomes of high-risk myeloma patients, or why they appear frequently in myeloma cells.
They speculated that additional copies of odd-numbered chromosomes may increase the number of genes involved in the suppression of tumors or in the sensitivity of myeloma cells to anti-myeloma drugs.
Dr. Shain also speculated that trisomies provide an alternate pathway of development for myeloma cells that cause them to become less malignant than their normal modes of development.
“Trisomies may suggest an early or alternate transformational pathway in [the formation of myeloma cells], and myeloma cells that develop through this hypothetical pathway are less aggressive,” commented Dr. Shain
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: New MGUS with 2 lucent areas on skull
Dr. Berenson is fantastic and I periodically fly to California to meet with him since he is also my specialist. I will be very curious as to what he comes up with as a diagnosis in this situation. Volunteer to donate some blood for his BCMA research and you will get your parking validated if you do 
I don't know if you caught this recent article on cytogenetics and multiple myeloma, but is a very good reference guide. Trisomies can have a different meaning for MGUS and smoldering patients then they do for symptomatic multiple myeloma patients:
"Great article - cytogenetics (chromosomal abnormalities)" (forum disc. started Nov 3, 2015)
That's an interesting article on the potential implications of increased normal plasma cells with respect to disease progression. I don't recall ever hearing that before. Thanks for posting it.
I don't know if you caught this recent article on cytogenetics and multiple myeloma, but is a very good reference guide. Trisomies can have a different meaning for MGUS and smoldering patients then they do for symptomatic multiple myeloma patients:
"Great article - cytogenetics (chromosomal abnormalities)" (forum disc. started Nov 3, 2015)
That's an interesting article on the potential implications of increased normal plasma cells with respect to disease progression. I don't recall ever hearing that before. Thanks for posting it.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New MGUS with 2 lucent areas on skull
Brandyjoco,
I was thinking a bit more about this and I'm wondering if you are looking at the whole picture of the bone marrow plasma cell percentages in the bone marrow biopsy report. There are usually several different percentages of various cellular populations that are disclosed in these reports.
Is there a section in the report that summarizes the overall findings of the report and/or other sections of the report that refer to any other cellular populations and/or any other findings that refer to abnormal cells via microcscopic inspection, etc?
I was thinking a bit more about this and I'm wondering if you are looking at the whole picture of the bone marrow plasma cell percentages in the bone marrow biopsy report. There are usually several different percentages of various cellular populations that are disclosed in these reports.
Is there a section in the report that summarizes the overall findings of the report and/or other sections of the report that refer to any other cellular populations and/or any other findings that refer to abnormal cells via microcscopic inspection, etc?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New MGUS with 2 lucent areas on skull
Hi Mutibilly,
I am quite confused as to the 10% polyclonal findings also. I read over the entire report. The flow cytometry interpretation is:
1. No significant immunophenopic abnormalities detected
2. Detectable plasma cells (0.1%) polyclonal
All the CD markers and everything came out very normal.
However, the FISH result states:
Result: Abnormal multiple myeloma FISH Panel a gain of chromosomes 7 and 9, gain of CCND1 and a gain of TP53 gene.
The TP53 gene has me worried because even though it is a gain, TP53 gene mutations are only found in advanced myeloma. It is rare, however only 3% of newly diagnosed myeloma patients have mutated TP53 genes. Mutated TP53 genes usually have the same negative prognostic results as del(17p). The only good thing is the findings that show that del(17p) over 60% is usually the issue. Also, the combination of the trisomies with the TP53 mutated genes may compensate one another.
The PET/CT results will tell us a lot. I will need to call Dr. Berenson and set up a second opinion for just after Thanksgiving since the PET/CT results are due Nov 20 and will tell us if there is any cancer or bone issue activity going on.
My husband is quite healthy. We married later in life and are both working full time still raising 11 year old twins and helping with household, finances, and care for my 84 year old mom and his 84 year old dad (they each live on their own 30 minutes away). So we both have had quite a bit of stress and very tired at this age ...
This is quite the wake up call to begin celebrating life and be very thankful for all that we have been blessed with ...
I am quite confused as to the 10% polyclonal findings also. I read over the entire report. The flow cytometry interpretation is:
1. No significant immunophenopic abnormalities detected
2. Detectable plasma cells (0.1%) polyclonal
All the CD markers and everything came out very normal.
However, the FISH result states:
Result: Abnormal multiple myeloma FISH Panel a gain of chromosomes 7 and 9, gain of CCND1 and a gain of TP53 gene.
The TP53 gene has me worried because even though it is a gain, TP53 gene mutations are only found in advanced myeloma. It is rare, however only 3% of newly diagnosed myeloma patients have mutated TP53 genes. Mutated TP53 genes usually have the same negative prognostic results as del(17p). The only good thing is the findings that show that del(17p) over 60% is usually the issue. Also, the combination of the trisomies with the TP53 mutated genes may compensate one another.
The PET/CT results will tell us a lot. I will need to call Dr. Berenson and set up a second opinion for just after Thanksgiving since the PET/CT results are due Nov 20 and will tell us if there is any cancer or bone issue activity going on.
My husband is quite healthy. We married later in life and are both working full time still raising 11 year old twins and helping with household, finances, and care for my 84 year old mom and his 84 year old dad (they each live on their own 30 minutes away). So we both have had quite a bit of stress and very tired at this age ...
This is quite the wake up call to begin celebrating life and be very thankful for all that we have been blessed with ...
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brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: New MGUS with 2 lucent areas on skull
Hi All,
I have a follow up of my husbands diagnosis. It sure take a long time to get through all of the testing. As a recap, at first it looked like he was MGUS with an Mspike of 1.0 IGG Kappa and a high free Kappa light chain. Next, the xrays showed some suspicious lucent areas on the skull with a mild fracture at the L1/L2 vertebrae which prompted a BMB. The BMB showed 10% polyclontal cells (which was strange) and trisonomies and TP53 gains on the Fish. Next, he did a PET/CT scan. We just received the good news that the PET/CT scan came back clear! We are so relieved. So he is officially Smoldering Myeloma.
The oncologist had further testing done to find out why all 10% plasma cells were polyclonal. It seems that the report came back that there were Kappa Light Chains in that number. 30% of the plasma cells are abnormal. We have a followup in February and i have asked for a DEX scan to be sure his bones are strong (just to be sure?). The oncologist thought that the Dex scan was an odd request but I would rather be aware of any possible fracture issues.
I have a follow up of my husbands diagnosis. It sure take a long time to get through all of the testing. As a recap, at first it looked like he was MGUS with an Mspike of 1.0 IGG Kappa and a high free Kappa light chain. Next, the xrays showed some suspicious lucent areas on the skull with a mild fracture at the L1/L2 vertebrae which prompted a BMB. The BMB showed 10% polyclontal cells (which was strange) and trisonomies and TP53 gains on the Fish. Next, he did a PET/CT scan. We just received the good news that the PET/CT scan came back clear! We are so relieved. So he is officially Smoldering Myeloma.
The oncologist had further testing done to find out why all 10% plasma cells were polyclonal. It seems that the report came back that there were Kappa Light Chains in that number. 30% of the plasma cells are abnormal. We have a followup in February and i have asked for a DEX scan to be sure his bones are strong (just to be sure?). The oncologist thought that the Dex scan was an odd request but I would rather be aware of any possible fracture issues.
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
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