Hi,
I was just diagnosed as smoldering myeloma from MGUS and am barely at the smoldering level with ~10% plasma cells post recent bone marrow biopsy / aspirate .
M spike is near 0.4 and I'm clear - CRAB, PET scan, skeletal survey, FLC, etc. except for just 0.7 low hemoglobin (with more bloodwork tied to iron and anemia in process).
2010 age 39:
M spike IgG was first noted by accident (SPEP reviewed by rheumatoid specialist) nearly 4 years ago with a level of 0.10 g/dL, referred then to a hematologist which dismissed the slight monoclonal paraprotein finding and it wasn't until last year that I self referred myself for followup as my wife has leukemia and I began to read up on blood cancers and came across M spikes and realized I should have been followed up.
My M spike was 0.375 last year and ranged up to 0.650. but tests were done at 3 different labs last year and my current full workup is yet a 4th lab.
2013: My 1st SPEP in nearly 3 years indicated 4.0 SPEP and skeletal survey indicated possible lytic lesions (skull) which thankfully turned out to be venous lakes. A bone marrow biopsy (BMB) / aspirate was done last summer, 7% plasma cells found, no clonal population noted, not sure on other details from the 2013 flow cytometry.
Basically labs were done every 90 days and last year CRAB, FLC - all fine, only the higher % of plasma cells noted.
Fast forward to last month - as I was already traveling to a major cancer center for my wife's leukemia, we decided to have my case evaluated at the same center.
My older BMB slides were reviewed by the new center and I underwent extensive testing over the past couple of weeks (again, many labs, PET scan, MRI with contrast, BMB, skeletal survey).
This time my M spike didn't really change much and in fact was lower than 0.650 from last October - perhaps the different labs account for the change, or the value is really lower (which I'll take).
At present my full flow cytometry results are not available but all other testing results were ready - fine on all blood work, which included a ton of tests (HIV, hepatitis, SPEP, CBC, FLC, etc) - only hemoglobin again slightly off.
Initial results from BMB results did indicate 10% plasma cells, % clonal still not known, but some new items were present (the MD will review my full results once all are available, so I'm not sure of some of the results and that's why I'm posting here).
CD56, CD117 were shown to be positive as well as deletion of chromosome 8q (I've searched and found 8p deletion to be common, but not 8q, when related to myeloma). I'm also not totally sure of the + CD 56 and CD117 implications as well as are these on what % of plasma cells - I'm sure the doctors will review the total findings once ready, which may be in a few days).
Anyone have any thoughts or guidance on interpreting these results?
Also they are presenting my case in front of the review board, which I guess is a good thing, as many eyes will view my case, but for a major well known cancer center specializing in myeloma, I didn't exactly expect for my case to "stand out". So that was a little bit of a surprise but, overall, I'm sure a good thing vs remaining "back home" at a facility with little resources / experience.
I'll post more detailed flow cytometry results as well as the diagnosis / comment when I have a copy in front of me.
I've been lurking around the board and finally setting up an account. Thanks to all that support others in this forum.
Forums
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
Hi Pinball and welcome to the forum. Your diagnosis sounds very similar to mine.
Just FYI, my understanding is that expressing CD56 and CD117 is a good thing . Not having these actually makes for a poorer prognosis (although there is debate about whether not having CD56 expression is a bad thing).
An 8p deletion has no prognostic significance, positive or negative.
http://bloodjournal.hematologylibrary.org/content/116/15/e56.full
So, you should be happy as far as a SMM diagnosis goes...no bad cytogenetics
You may want to also look at your serum free light chain ratio. Some believe that this can be an indicator for higher risk of progression, if < 0.125 or > 8.
That is curious that your case would merit a board review. Seems like a pretty pedestrian SMM diagnosis from what you've said here.
Just FYI, my understanding is that expressing CD56 and CD117 is a good thing . Not having these actually makes for a poorer prognosis (although there is debate about whether not having CD56 expression is a bad thing).
An 8p deletion has no prognostic significance, positive or negative.
http://bloodjournal.hematologylibrary.org/content/116/15/e56.full
So, you should be happy as far as a SMM diagnosis goes...no bad cytogenetics
You may want to also look at your serum free light chain ratio. Some believe that this can be an indicator for higher risk of progression, if < 0.125 or > 8.
That is curious that your case would merit a board review. Seems like a pretty pedestrian SMM diagnosis from what you've said here.
Last edited by Multibilly on Thu May 08, 2014 5:24 pm, edited 2 times in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Barely "upgraded" from MGUS to smoldering myeloma
I'm so thankful that I'm asymptomatic and will feel much better once all results are in and I travel back to the cancer center for a full explanation of the markers which were found.
I'm not so worried about the 10% plasma cell % in marrow, but until I understand the below items I think I'll be a little uneasy, just because I expected to leave as "MGUS". I expected the 7% plasma results from last July (bone marrow biopsy) not to change, and I hope that it really didn't because the sample was from the opposite side and at another hospital system. So maybe there really wasn't a change since last year, simply more of a "hot spot" was found this time.
However, the new hospital did examine slides from last year and CD56 was "negative" -- no mention of CD117 (last year's slides) -- so it seems that CD56 just appeared, or maybe it's because of a different sample area.
I'm taking it that the outstanding results will indicate % of cells with CD56 and CD117 markers as well as clonal population.
I'm not so worried about the 10% plasma cell % in marrow, but until I understand the below items I think I'll be a little uneasy, just because I expected to leave as "MGUS". I expected the 7% plasma results from last July (bone marrow biopsy) not to change, and I hope that it really didn't because the sample was from the opposite side and at another hospital system. So maybe there really wasn't a change since last year, simply more of a "hot spot" was found this time.
However, the new hospital did examine slides from last year and CD56 was "negative" -- no mention of CD117 (last year's slides) -- so it seems that CD56 just appeared, or maybe it's because of a different sample area.
I'm taking it that the outstanding results will indicate % of cells with CD56 and CD117 markers as well as clonal population.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
Content from avail bone marrow diagnosis (last week's procedure):
"Plasma cells represent 10% of marrow cells"
"Flow cytometry reveals that plasma cells are aberrant positive for CD56 and CD117"
"Cytogenic on bone marrow revealed deletion of chromosome 8q"
A diagnosis is not provided - it states "see comment" - the comment is then....
"Please correlate with flow cytometric analysis for further evaluation of disease" .
It seems next week more info will be available and they will review final results with me.
I'd like to know how the deletion of 8q plays into things (I've read deletion of 8p is common in myeloma patients, but not 8q).
Also the CD56 and CD117 from what I can find seems to point to "hyperdiploidy". I have no idea what these markers mean exactly and how many cells contain the markers?
Do the CD markers have an impact on the progression to myeloma from smoldering, or only how well the cells would respond to treatment once full myeloma is present?
Thankful the only out of range item after urine protein, SPEP, FLC, PET, MRI, XRAYS's etc was very slight hemoglobin decrease and no lesions / issues, but until i understand the "aberrant" markers and plasma cell population and being smoldering myeloma versus MGUS on paper (which may be no difference in reality), I'm a little anxious about the situation.
I'm sure that's normal until everything is explained which I'm sure I'll get a ton of info once all results are ready and my case reviewed by the entire department.
"Plasma cells represent 10% of marrow cells"
"Flow cytometry reveals that plasma cells are aberrant positive for CD56 and CD117"
"Cytogenic on bone marrow revealed deletion of chromosome 8q"
A diagnosis is not provided - it states "see comment" - the comment is then....
"Please correlate with flow cytometric analysis for further evaluation of disease" .
It seems next week more info will be available and they will review final results with me.
I'd like to know how the deletion of 8q plays into things (I've read deletion of 8p is common in myeloma patients, but not 8q).
Also the CD56 and CD117 from what I can find seems to point to "hyperdiploidy". I have no idea what these markers mean exactly and how many cells contain the markers?
Do the CD markers have an impact on the progression to myeloma from smoldering, or only how well the cells would respond to treatment once full myeloma is present?
Thankful the only out of range item after urine protein, SPEP, FLC, PET, MRI, XRAYS's etc was very slight hemoglobin decrease and no lesions / issues, but until i understand the "aberrant" markers and plasma cell population and being smoldering myeloma versus MGUS on paper (which may be no difference in reality), I'm a little anxious about the situation.
I'm sure that's normal until everything is explained which I'm sure I'll get a ton of info once all results are ready and my case reviewed by the entire department.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
Woops, note that I commented on an 8p del, not an 8q del. The article I linked to said most 8q deletions were interstitial, so you might want to see if it disappears when your get your next BMB.
Even if an 8q del was determined to be deleterious for a symptomatic multiple myeloma patient, remember that there is no established link between risk of progression and cytogenetics in SMM patients.
Even if an 8q del was determined to be deleterious for a symptomatic multiple myeloma patient, remember that there is no established link between risk of progression and cytogenetics in SMM patients.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Barely "upgraded" from MGUS to smoldering myeloma
Thank you Multibilly for the 8q update - hopefully it's not present in the future.
You seem to be very informed - can you tell me if there's much meaning behind the following (found on my recent marrow report):
"Flow cytometry reveals that plasma cells are aberrant positive for CD56 and CD117"
"CD138 ~10% of marrow cells are positive"
I'm not sure if these "markers" are stating that i actually have neoplastic cells present or simply the potential for them to become "cancerous" (at this time, other than a slightly low hemoglobin value, all other tests / labs are fine, and I underwent a battery of testing over the past 1 - 2 weeks).
It seems you stated that in smoldering myeloma patients perhaps such markers are not important (I'm not sure if you were referring to chromosome deletions or aberrant plasma cells --CD56, CD117 in my case).
Thanks
You seem to be very informed - can you tell me if there's much meaning behind the following (found on my recent marrow report):
"Flow cytometry reveals that plasma cells are aberrant positive for CD56 and CD117"
"CD138 ~10% of marrow cells are positive"
I'm not sure if these "markers" are stating that i actually have neoplastic cells present or simply the potential for them to become "cancerous" (at this time, other than a slightly low hemoglobin value, all other tests / labs are fine, and I underwent a battery of testing over the past 1 - 2 weeks).
It seems you stated that in smoldering myeloma patients perhaps such markers are not important (I'm not sure if you were referring to chromosome deletions or aberrant plasma cells --CD56, CD117 in my case).
Thanks
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
CD138 is a specific "cluster of differentiation" (that's where the "CD" name comes from), aka an antigen marker on the cell's surface http://en.wikipedia.org/wiki/Cluster_of_differentiation
The specific CD138 marker is found pretty uniquely on plasma cells, so they use it to count how many overall plasma cells you have (both normal and cancerous). They have a stain that makes cells with the CD138 marker stand out so that one can then count them under a microscope. You can also count plasma cells with the CD138 marker via flow cytometry.
So your 10% number is a measure of your overall plasma cells, healthy and otherwise....and this is what they use for staging. A normal plasma cell count is < 5%.
CD56 and CD117 are are typically associated with myeloma cells... but be aware that there are quite a variety of different CDs that show up in varying degrees and combinations on myeloma cells, not just CD56 and CD117. So, you have an M-Spike, you have cells with CD56 and CD117 markers and you have a plasma cell count at 10%. So,I think it is safe to say you have neoplastic cells and they are likely expressing CD56 and CD117...but I'm not a doc and only your doc can tell you that with certainty.
To my knowledge, neither CD expression or chromosomal aberrations have been correlated to risk of progression in SMM patients...again, it's a different story with symptomatic multiple myeloma patients. So, as a SMM patient that is not currently doing chemo, I really don't pay much (if any) attention to the immunophenotype (CD expression profile) of my myeloma cells. I guess if I had another BMB (nothing currently warrants I do another one), I would go back and compare the old flow cytometry results to my new results, as this might give me a clue if any new subclonal lines were evolving.
You might find Ricardo's comments helpful in understanding the risk-of-progression factors (which is what smolderers typically fret over) :
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-myeloma-t1542.html
The specific CD138 marker is found pretty uniquely on plasma cells, so they use it to count how many overall plasma cells you have (both normal and cancerous). They have a stain that makes cells with the CD138 marker stand out so that one can then count them under a microscope. You can also count plasma cells with the CD138 marker via flow cytometry.
So your 10% number is a measure of your overall plasma cells, healthy and otherwise....and this is what they use for staging. A normal plasma cell count is < 5%.
CD56 and CD117 are are typically associated with myeloma cells... but be aware that there are quite a variety of different CDs that show up in varying degrees and combinations on myeloma cells, not just CD56 and CD117. So, you have an M-Spike, you have cells with CD56 and CD117 markers and you have a plasma cell count at 10%. So,I think it is safe to say you have neoplastic cells and they are likely expressing CD56 and CD117...but I'm not a doc and only your doc can tell you that with certainty.
To my knowledge, neither CD expression or chromosomal aberrations have been correlated to risk of progression in SMM patients...again, it's a different story with symptomatic multiple myeloma patients. So, as a SMM patient that is not currently doing chemo, I really don't pay much (if any) attention to the immunophenotype (CD expression profile) of my myeloma cells. I guess if I had another BMB (nothing currently warrants I do another one), I would go back and compare the old flow cytometry results to my new results, as this might give me a clue if any new subclonal lines were evolving.
You might find Ricardo's comments helpful in understanding the risk-of-progression factors (which is what smolderers typically fret over) :
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-myeloma-t1542.html
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Barely "upgraded" from MGUS to smoldering myeloma
Got it , I see now that last year my marrow was CD56 negative with total PC percentage of 7% , no clonal cells were found though with an M spike I had to have had some clonal plasma cells to produce the M spike but in my last July marrow sample they didn't happen to capture any clonal cells.
The fact that just now I'm 10% total PC and CD56 and CD117 were found isn't so aalarming as perhaps this time they just happened to hit a site with a little more plasma cells and caught some CD56 and CD117 aberrant cells , hopefully once full results are ready the % of clonal cells will be low.
I have yet to read the link which u posted but will do so this weekend.
I have seen that the only thing that may be an alarm regarding the CD56 and CD117 positive cells is if 95% of plasma cells are indeed aberrant. I doubt that will be the case.
I am now much yo to date so when we review my final results (with my name oncologist) I'll be prepared and ready to ask questions. I feel I'm in good hands with my case being submitted for review to the lymphoma Myeloma dept and I've had thorough testing and all is fine, all that stands out is the plasma cell marrow percentage and mild M spike.
Being igG, flc ratio fine, CRAB fine, PET, MRI clear as well as skeletal survey etc plus I feel fine I'm confident I'm OK at the moment, very glad I sought a review at an out of town cancer center and will be monitored closely for any changes .
My wife unfortunately has leukemia so we have plenty else taking place. She was diagnosed 18 months ago and may have a stem cell transplant or life long TKI treatment. We're both very young for our conditions, what bad luck, but beyond our control, now back to concentrating on her condition as her BCR ABL score is up.
I never imagined last year after her first marrow biopsy when diagnosed with luekmia that I'd to be undergoing marrow biopsies and many more to come compared to her as PCR testing provides very detailed information, too bad there's no way to pull plasma % without a marrow biopsy, aspirate , ha. Our insurance company must love us, dual hematology appointments, her $8k monthly oral chemo which is perm and $1.2 mill approved SCT (doubt she'll require transplant).
I wonder where the time has went the last eighteen months, at least I think soon I can put my smoldering myeloma case to rest and put energy into her treatment.
Thanks again for the info.
The fact that just now I'm 10% total PC and CD56 and CD117 were found isn't so aalarming as perhaps this time they just happened to hit a site with a little more plasma cells and caught some CD56 and CD117 aberrant cells , hopefully once full results are ready the % of clonal cells will be low.
I have yet to read the link which u posted but will do so this weekend.
I have seen that the only thing that may be an alarm regarding the CD56 and CD117 positive cells is if 95% of plasma cells are indeed aberrant. I doubt that will be the case.
I am now much yo to date so when we review my final results (with my name oncologist) I'll be prepared and ready to ask questions. I feel I'm in good hands with my case being submitted for review to the lymphoma Myeloma dept and I've had thorough testing and all is fine, all that stands out is the plasma cell marrow percentage and mild M spike.
Being igG, flc ratio fine, CRAB fine, PET, MRI clear as well as skeletal survey etc plus I feel fine I'm confident I'm OK at the moment, very glad I sought a review at an out of town cancer center and will be monitored closely for any changes .
My wife unfortunately has leukemia so we have plenty else taking place. She was diagnosed 18 months ago and may have a stem cell transplant or life long TKI treatment. We're both very young for our conditions, what bad luck, but beyond our control, now back to concentrating on her condition as her BCR ABL score is up.
I never imagined last year after her first marrow biopsy when diagnosed with luekmia that I'd to be undergoing marrow biopsies and many more to come compared to her as PCR testing provides very detailed information, too bad there's no way to pull plasma % without a marrow biopsy, aspirate , ha. Our insurance company must love us, dual hematology appointments, her $8k monthly oral chemo which is perm and $1.2 mill approved SCT (doubt she'll require transplant).
I wonder where the time has went the last eighteen months, at least I think soon I can put my smoldering myeloma case to rest and put energy into her treatment.
Thanks again for the info.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
While waiting for all results tied to much testing over the past near 2 weeks: another appeared and it appears that both urine and serum protein electrophoresis are normal as is my serum free light chain (FLC) tests but urine immunofixation indicates:
"free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones protein"
Urine protein electrophoresis does not indicate the presence of a definitive Bence Jones protein peak. It doesn't however though indicate a few values as off including a higher than normal overall volume of protein in the urine:
Albumin is a little low and Globulin a little high (just 3 or so units out of range).
Total volume seems to be high at 162 mg/TV (range of 50 - 100 shown as normal) .
From early researching it appears perhaps this is related to my PC count in marrow doubling from last summer (10% total now, still know known % of those that are aberrant) and though my M spike (SPEP - blood) is relatively stable since last summer, there may be an increase in protein which is why finally I'm showing higher than normal protein in urine (with globulin is high in urine which matches up) and I'm not so sure on the fact that a kappa Bence-Jones protein is present (I'm IgG K) - hopefully this is something that will remain in my state of Smoldering Myeloma / high risk MGUS and not indicative of any sort of progression toward multiple myeloma.
The only other questions bale item that was noted after much thorough testing recently - slightly low hemoglobin level of 13.3 (normal range begins at 14.0) which more labs were taken recently and results outstanding.
I will be able to review these items with my care team over the next week or two and I know then I'll learn much more, in the mean time I was trying to get myself familiar with the tests / results other than the very basic items such as M spike , PC % , CRAB.
Hopefully "free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones" is something that may stick around for many years during a dormant SMM period.
"free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones protein"
Urine protein electrophoresis does not indicate the presence of a definitive Bence Jones protein peak. It doesn't however though indicate a few values as off including a higher than normal overall volume of protein in the urine:
Albumin is a little low and Globulin a little high (just 3 or so units out of range).
Total volume seems to be high at 162 mg/TV (range of 50 - 100 shown as normal) .
From early researching it appears perhaps this is related to my PC count in marrow doubling from last summer (10% total now, still know known % of those that are aberrant) and though my M spike (SPEP - blood) is relatively stable since last summer, there may be an increase in protein which is why finally I'm showing higher than normal protein in urine (with globulin is high in urine which matches up) and I'm not so sure on the fact that a kappa Bence-Jones protein is present (I'm IgG K) - hopefully this is something that will remain in my state of Smoldering Myeloma / high risk MGUS and not indicative of any sort of progression toward multiple myeloma.
The only other questions bale item that was noted after much thorough testing recently - slightly low hemoglobin level of 13.3 (normal range begins at 14.0) which more labs were taken recently and results outstanding.
I will be able to review these items with my care team over the next week or two and I know then I'll learn much more, in the mean time I was trying to get myself familiar with the tests / results other than the very basic items such as M spike , PC % , CRAB.
Hopefully "free kappa and free lambda light chain proteins are positive for a kappa Bence-Jones" is something that may stick around for many years during a dormant SMM period.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Barely "upgraded" from MGUS to smoldering myeloma
I will have a ton to review with the staff once all results are in) as not only did bence-jones proteinuria appear 2 days ago (immunofixation urine results arrived) but it seems the % of aberrant PC's is sort of on the high side (91%)...
Can anyone explain the two values - .41% nucleated cells as well as 91% of "total plasma cells" ?
Thanks
Aberrant plasma cells detected, 0.41% of total nucleated
cells and 91% of total plasma cells, consistent with Plasma Cell Neoplasm.
-The aberrant plasma cells CD38+, CD138+, CD19(partial), CD20(+), CD28(-),
CD56(-), CD117(+), cyto-Kappa(+), cyto-Lambda(-).
Can anyone explain the two values - .41% nucleated cells as well as 91% of "total plasma cells" ?
Thanks
Aberrant plasma cells detected, 0.41% of total nucleated
cells and 91% of total plasma cells, consistent with Plasma Cell Neoplasm.
-The aberrant plasma cells CD38+, CD138+, CD19(partial), CD20(+), CD28(-),
CD56(-), CD117(+), cyto-Kappa(+), cyto-Lambda(-).
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
12 posts
• Page 1 of 2 • 1, 2