When a bone marrow biopsy shows a borderline of 10% plasma cells, is it MGUS or smoldering multiple myeloma?
"The percentage of plasma cells is reassessed in clot specimen. CD138 positive cells (plasma cells) represent 10% of marrow cells by immunohistochemistry on clot specimen"
In the case above, sometimes I'm referred to as MGUS and other times smoldering multiple myeloma. From my research it seems it is clear cut, as the total of plasma cells even after a 2nd "re-count" are at 10%. So it is smoldering multiple myeloma.
Other figures as FYI: At time of bone marrow biopsy (BMB) above (May 2015) 10%, a 2013 BMB locally indicated 7% plasma cells per local reading of results, regional cancer center read the slides from 2013 as 5% .
M-spike at time of 2013 0.375 g/dL (3.75 g/L) IgG kappa, all immunoglobulins within normal levels, 0.7 free light chain ratio, negative urine protein electrophoresis (UPEP) for Bence Jones Protein (BJP) .
M-spike at time of BMB result above (May 2014) 0.425 and now 0.900 as of October 2015.
Also IgM has dropped to "26 mg/dl. FLC ratio now 1.30 (steadily rising as M spike has risen).
Immunoparesis though present with low IgM, IgA is within normal rage approx 232. Good IgG is under 300 (total minus 0.900 M spike).
No CRAB (multiple skeletal surveys since 2013 <3> as of last week, full body clear PET-CT May 2014 and May 2015 <due to 3 month low grade fever which origin never found, vanished late May of this year>). Proteinuria 200 mg each 24-hour urine test. No diabetes or high blood pressure (have never gotten reason for excessive protein in urine, I take it may be the M spike as the cause?).
Basically I'm asking if it's normal to sometimes classify a case such as mine as MGUS though the more than 1 year old BMB with an M spike "half" of the current value indicated 10% plasma cells (of which 91% were aberrant by the way), or should smoldering myeloma be the best diagnosis?
Thanks
Forums
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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: Smoldering multiple myeloma or MGUS?
Technically, the 10% cutoff is for the clonal plasma cell percentage, not total (monoclonal and polyclonal) plasma cell percentage. People without myeloma or MGUS have a bone marrow plasma cell percentage of a few percent, but the plasma cells are all polyclonal.
Since you probably also have a polyclonal plasma cell percentage that is a couple of percent, that would mean your monoclonal plasma cell percentage is under 10%. So, technically, you would fall into the MGUS category, at least based on that criterion.
Really, though, when you get up close to the 10% cutoff, it's probably best to think of the correct diagnosis as "borderline between MGUS and smoldering multiple myeloma." The disease probably isn't like most MGUS cases, but it's also probably not like most smoldering cases.
Since you probably also have a polyclonal plasma cell percentage that is a couple of percent, that would mean your monoclonal plasma cell percentage is under 10%. So, technically, you would fall into the MGUS category, at least based on that criterion.
Really, though, when you get up close to the 10% cutoff, it's probably best to think of the correct diagnosis as "borderline between MGUS and smoldering multiple myeloma." The disease probably isn't like most MGUS cases, but it's also probably not like most smoldering cases.
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Jonah
Re: Smoldering multiple myeloma or MGUS?
91% of all 2014 May BMB detected plasma cells are aberrant (neoplastic).
Hi Jonah, I've always wondered just that as well - the detail considered when comparing total plasma cells found in marrow versus those that are neoplastic and how that comes into play when hitting the smoldering multiple myeloma 10% or greater cut off.
In my case, 91% of all plasma cells (from the BMB noted in my post above, of which 10% cells were plasma cells). So I took that as if my total PC count was 10% May 2014 , of all marrow cells that are plasma cells, which is 10%, 91% of the plasma cells are aberrant. This would make for I supposed 9.1% clonal plasma cells and 0.9% polyclonal / normal plasma cells.
Today my M spike is 0.900 g/dL - more than 2x the M spike at the time of my last BMB in May 2014, for which the figures above are given.
My IgM continues to drop below normal as well (immunoparesis), with IgM in the mid 20's.
I wonder what my BMB report would indicate today as 1 year later my M spike has more than doubled?
Really I was just curious as to why sometimes I'm referred to as smoldering multiple myeloma and other times as high-risk MGUS per my BMB finding. I guess it's all the same.
If only my M spike would cease to increase / double yearly then I will be a little more relaxed
Thanks for reading and as FYI here's my cytogenic profile of last spring's BMB noted in my previous post calling out the amount of neoplastic and types of cells found:
May 2014 BMB study:
Interpretation:
Aberrant plasma cells detected, 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(-).
Hi Jonah, I've always wondered just that as well - the detail considered when comparing total plasma cells found in marrow versus those that are neoplastic and how that comes into play when hitting the smoldering multiple myeloma 10% or greater cut off.
In my case, 91% of all plasma cells (from the BMB noted in my post above, of which 10% cells were plasma cells). So I took that as if my total PC count was 10% May 2014 , of all marrow cells that are plasma cells, which is 10%, 91% of the plasma cells are aberrant. This would make for I supposed 9.1% clonal plasma cells and 0.9% polyclonal / normal plasma cells.
Today my M spike is 0.900 g/dL - more than 2x the M spike at the time of my last BMB in May 2014, for which the figures above are given.
My IgM continues to drop below normal as well (immunoparesis), with IgM in the mid 20's.
I wonder what my BMB report would indicate today as 1 year later my M spike has more than doubled?
Really I was just curious as to why sometimes I'm referred to as smoldering multiple myeloma and other times as high-risk MGUS per my BMB finding. I guess it's all the same.
If only my M spike would cease to increase / double yearly then I will be a little more relaxed
Thanks for reading and as FYI here's my cytogenic profile of last spring's BMB noted in my previous post calling out the amount of neoplastic and types of cells found:
May 2014 BMB study:
Interpretation:
Aberrant plasma cells detected, 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
Re: Smoldering multiple myeloma or MGUS?
Hi Pinball,
Maybe it's just me, but it seems like the picture isn't that complicated, although you're not working with a lot of data – just three sets of lab results, one from 2013, one from 2014, and one from 2015 (unless I've missed something).
The main markers that you want to be watching are your M-spike, free light chain levels and ratio, and your plasma cell percentage. These are the results for those readings that I was able to pull from your postings in this thread:
Date BMPC% M-Spike K/L Ratio
2013 5-7% 0.375 0.7
2014 10% 0.425 ?
2015 ? 0.900 1.3
When you look at the results this way, it's a bit easier to see why your doctors now think you're probably in the smoldering category, as opposed to MGUS. They're probably implying from the behavior of your M-spike that your plasma cell percentage has popped above 10%, and if it's more than a couple percent above the 10% threshold, then the monoclonal plasma cell percentage is probably above 10% as well.
I don't know if you're graphing these results and others, like your immunoglobulin levels and individual free light chain levels, but it's probably worth starting to do so. Also, if you get other blood tests more frequently – like hemoglobin, creatinine, calcium levels, and maybe beta2 microglobulin – I'd start graphing them too, especially since you'll have more data points and may see trends you can't see in the less frequent test results.
Good luck ... I hope your M-spike steadies and you're stuck in MGUS/smoldering "grayzone" for a really long time!
Maybe it's just me, but it seems like the picture isn't that complicated, although you're not working with a lot of data – just three sets of lab results, one from 2013, one from 2014, and one from 2015 (unless I've missed something).
The main markers that you want to be watching are your M-spike, free light chain levels and ratio, and your plasma cell percentage. These are the results for those readings that I was able to pull from your postings in this thread:
Date BMPC% M-Spike K/L Ratio
2013 5-7% 0.375 0.7
2014 10% 0.425 ?
2015 ? 0.900 1.3
When you look at the results this way, it's a bit easier to see why your doctors now think you're probably in the smoldering category, as opposed to MGUS. They're probably implying from the behavior of your M-spike that your plasma cell percentage has popped above 10%, and if it's more than a couple percent above the 10% threshold, then the monoclonal plasma cell percentage is probably above 10% as well.
I don't know if you're graphing these results and others, like your immunoglobulin levels and individual free light chain levels, but it's probably worth starting to do so. Also, if you get other blood tests more frequently – like hemoglobin, creatinine, calcium levels, and maybe beta2 microglobulin – I'd start graphing them too, especially since you'll have more data points and may see trends you can't see in the less frequent test results.
Good luck ... I hope your M-spike steadies and you're stuck in MGUS/smoldering "grayzone" for a really long time!
-
Jonah
Re: Smoldering multiple myeloma or MGUS?
Hey Jonah,
Actually I have a ton of labs - prob 300 - 400 total just since last spring 2014 since I began to be seen at a major cancer center, My wife has a rare leukemia for her relatively younger age, so we really had to begin to take her out of town to the larger cancer center. Once I began to learn about her cancer, I came across M-spikes / multiple myeloma and realized that my original M-spike and no followup locally from August 2010 required follow-up and I began to see her hematologist at home as well as once we switched her care to the specialty cancer center six hours away. Thankfully her leukemia is under control though it requires daily TKI chemo treatment and possibly a stem cell transplant should her treatment ever fail.
I've had two full body PET scans, 2 skeletal surveys, MRI of entire spine, amyloid biopsy (abdominal fat pad) , EVGF to check for POEMS (result was abnormal but actually below normal, the opposite of a POEMS of active multiple myeloma finding which would be elevated). Some of the reasons I believe for the amyloid, POEMS testing - low testosterone, borderline anemia, lower leg swelling (also bnp and other cardiac markers taken which were mildly above normal).
I haven't had a BMB since last spring and it doesn't appear there would be much benefit for one per my recent visit, even though my M spike is now more than 2x than the total of last spring when my BMB results put me just barely into the smoldering multiple myeloma range. My only two BMB's have been summer 2013 and spring 2014. My wife has had 5 - 6 of them in the past 2 years since she has had leukemia and that's a procedure I really hope neither of us have to go thru anytime soon, especially her. Even at a huge cancer center, the staff is surprised by our age that we are co-patients, though certainly her case is serious while mine is just "watchful waiting." I need to be sure I'm fine to care for us long term as we are barely now in our 40's and have a while to go yet (her targeted TKI therapy med is over $11k per month and she must take it for life, so definitely I need to be able to provide insurance for both of us).
Anyway, I have put most all of my labs entered into an Excel spreadsheet. There's so many items; I didn't list too many here. My H&H has been at the low end of normal since starting testosterone replacement therapy (the only "off" items on my CBC are always high lymphocytes, low red cell distribution width, high mean platelet volume).
Also of note while my UPEP is always clear of BJP, my overall protein in each 24-hour urine for the past year includes a higher than normal level of overall protein at around 200 mg. I do not have diabetes or high blood pressure, nobody can ever really say why I have proteinuria, I guess they don't want me to worry, but my guess is it is due to the increasing M spike resulting in excessive protein in urine overall. BJP has only been shown via IFE urine during my 1st workup at the major cancer center last spring. My UPEP from last week is still pending. Hopefully it will remain clear of a BJP though it was higher than ever in the level of overall protein and the globulin level is usually higher than normal and albumin lower than normal (not by a lot).
One item that I guess I worry with a little besides the increasing M spike, FLC ratio each visit is that my IgM level continues to drop below normal. When it 1st fell below normal last August 2014 they said it would likely be temporary and rise into normal levels once again, where instead it drops a little each visit and remains in the lower mid 20's. Dating back to my local specialist they have always initially pointed out it was a good sign that my good immunoglobulin levels were normal so when a year later that changes for the negative it feels a little weird.
Something that always stands out if I ever research smoldering multiple myeloma is immunoparesis (in my case low IgM) and 95% or more plasma cells as aberrant (my level is 91%). I'd feel better if my uninvolved immunoglobulins were all within normal limits and the aberrant % a bit lower, as those are two items that seem to always appear as noted in smoldering myeloma articles towards a higher risk for progression (though the other items I'm clear as my FLC ratio is within normal limits and overall plasma cell % on the low end). Hopefully I will never need a BMB anytime soon but if so the % will not have increased very much.
As you said, hopefully my M-spike levels out and I can sit for a while without any changes while the smoldering myeloma vaccine trials continue.
Thanks a lot for reading hope all is well as can be with your case.
FYI:
Hemoglobin - was under 12 last Fall but now 14.2 following testosterone HRT
Creatinine - no real change, at the lower end of normal
Calcium levels - consistently in the middle range around 9.2
B2 microglobulin - steady always at 1.5, never changes thankfully
Kappa FLC - Apr 2014 - 9.91 , rises each visit, now as of Oct 2015 : 15.8
Lambda FLC - Apr 2014: 12.6 , slightly down each visit, now Oct 2015 - 11.1
K/L ratio - 0.7 Apr 2014 upwards each visit, now Oct 2015 - 1.36
M spike: August 2010 - 0.100 g/dL
*When the M spike was first found, routine blood work was ran regarding extreme knee swelling. An SPEP turned up a "faint paraprotein." I was referred to a hematologist and she thought that with the very low level and my age (late 30's) that it was not a true issue but rather a temporary response – my body producing the temporary M protein in response to the extreme knee swelling / fluid that I experienced. I was on crutches for many months following arthoscopic knee surgery that was supposed to repair possible meniscus damage, but in reality once in surgery nothing was found or done though afterwards my knee was even more swollen than previously and my entire leg became mega swollen and painful. I couldn't move my knee / leg at all for weeks w/o extreme pain, and I required ultrasounds daily checking for blood clots, draining the knee of 40 - 50 cc of fluid then and even now - the fluid returns, The major cancer center has performed 2 MRI's on my knee last year and a bone bruise is present as it was also shown on an MRI from 2011, apparently from pressure from the extreme fluid. I was told in 2011 the bone bruise which is actually on the edge of the tibia would clear but it remains. There is no link to multiple myeloma via the two MRI's with contrast at the cancer center, so I deal with the pain / swelling to this day which nobody can explain, from ortho, rheumatology, now oncology ....
The orig local hem/onc specialist didn't ever follow up with me. As noted above she thought my faint paraprotein was just due to inflammation. It wasn't until early 2013 when my wife was diagnosed with cancer and I was reading up on her leukemia that I came across MGUS / multiple myeloma and realized that I should have been checked again to see if my M spike was perm or not. Then I began to see my wife's local hem/onc doctor and ultimately moved along with her my care to the specialty cancer center later in 2013 once our insurance was cleared to do so.
M spike:
Summer 2013: 0.375
Spring 2014: 0.400 (by mistake i listed .425 earlier)
End of 2014: 0.700
Jan & April 2015: still 0.700
Oct 2015 presently 0.900
SERUM PRO ELECT ALPHA 1 for near 1 year has been slightly high at 0.3 g/dL
I've had major workups summer and fall of 2013 locally and also spring, fall, winter, of 2014 at the major cancer center as well as Jan, April and this month for 2015. Each time a ton of labs are performed and as I noted I've had a couple of full body PET CT scans, MRI's (full spinal, 2x knee) and a skeletal survey locally in 2013 and April 2014 at the cancer center as well as just now at the cancer center once again.
Outside of the initial skeletal survey turning up possible myeloma lesions, which resulted in my 1st BMB summer 2013 locally. Turned out possible lytic lesions on the skull were venous lakes, but that 1st survey and M-spike rising from 0.100 to 0.375 prompted a local hematologist to perform my 1st BMB, which they counted as 7% plasma cells and the cancer center a year later reading the results as 5% and then performing their own BMB last spring which put me into the 10% plasma cell range and since then increasing M spike that's doubled since that last BMB spring 2014.
Sorry this is so lengthy but there are so many tests - pieces - easily I must have actually over 400 lab values just at the major cancer center if sort by all types (cbc, special chemistry, pathology, radiology, etc). My wife's luekemia, while it requires more BMB's, doesn't include nearly as many tests as my inactive condition!
I really am not worried at all that I have an active condition at this time. Totally clear as free of CRAB criteria though I wish the proteinuria didn't exist (200 mg protein each 24-hour urine) and the following items stop trending the "wrong" way:
- Increasing K/L ratio (also free kappa rising from 9.9 to 15.8)
- M spike doubling just in the past year (since the 10% PC marrow finding the M spike is now 2x the level that it was when I was tagged as borderline smoldering multiple myeloma. I was hoping the M spike would level out, not double, making me sometimes wonder what would my PC % be at this moment with the much higher M spike if it was 10% when the M spike was only .400)
- Dropping IgM value - immunoparesis, as it is. Always if performing a search immunoparesis is associated with a higher level of risk for progression
- Total IgG level - M spike = Healthy IgG - is under 400 which is also below normal
It's just weird sitting back and as the past couple of years go by see the M spike actually nearly triple all while knowing the 92% aberrant plasma cells were found last year (while the M spike was much lower than present). I guess seeing my wife have an active cancer (leukemia) it also makes me see the effects of a blood cancer 1st hand. Our lives have totally changed from never going to the doctor very often to an incredible amount of tests, appointments, etc for both of us the past 2 years and my wife being on a perm oral chemo for life which causes extreme side effects more often than not (nausea, low grade temp, bone pain).
The whole thing freaks me out a little LOL, but in a couple of weeks I'll forget about my deal now that I have graphed my latest labs and just try not to think about it (it's difficult to try to stay educated but not worry too much ...) until my next workup. Most of all I'm thankful that my case is NOT active right now and cross my fingers that my FLC ratio, M spike, IgM, all remain the same or somehow improve if that's possible.
Sorry for the long post. Again, there's so many tests / results etc I could easily fill up this post with pages with for all types of reports below - maybe 400 - 500 total values
Report types:
Cytogenetics
Special Chemistry
Microbiology
Flow Cytometry
Hematology
Radiology
Pathology
Molecular Diag
Actually I have a ton of labs - prob 300 - 400 total just since last spring 2014 since I began to be seen at a major cancer center, My wife has a rare leukemia for her relatively younger age, so we really had to begin to take her out of town to the larger cancer center. Once I began to learn about her cancer, I came across M-spikes / multiple myeloma and realized that my original M-spike and no followup locally from August 2010 required follow-up and I began to see her hematologist at home as well as once we switched her care to the specialty cancer center six hours away. Thankfully her leukemia is under control though it requires daily TKI chemo treatment and possibly a stem cell transplant should her treatment ever fail.
I've had two full body PET scans, 2 skeletal surveys, MRI of entire spine, amyloid biopsy (abdominal fat pad) , EVGF to check for POEMS (result was abnormal but actually below normal, the opposite of a POEMS of active multiple myeloma finding which would be elevated). Some of the reasons I believe for the amyloid, POEMS testing - low testosterone, borderline anemia, lower leg swelling (also bnp and other cardiac markers taken which were mildly above normal).
I haven't had a BMB since last spring and it doesn't appear there would be much benefit for one per my recent visit, even though my M spike is now more than 2x than the total of last spring when my BMB results put me just barely into the smoldering multiple myeloma range. My only two BMB's have been summer 2013 and spring 2014. My wife has had 5 - 6 of them in the past 2 years since she has had leukemia and that's a procedure I really hope neither of us have to go thru anytime soon, especially her. Even at a huge cancer center, the staff is surprised by our age that we are co-patients, though certainly her case is serious while mine is just "watchful waiting." I need to be sure I'm fine to care for us long term as we are barely now in our 40's and have a while to go yet (her targeted TKI therapy med is over $11k per month and she must take it for life, so definitely I need to be able to provide insurance for both of us).
Anyway, I have put most all of my labs entered into an Excel spreadsheet. There's so many items; I didn't list too many here. My H&H has been at the low end of normal since starting testosterone replacement therapy (the only "off" items on my CBC are always high lymphocytes, low red cell distribution width, high mean platelet volume).
Also of note while my UPEP is always clear of BJP, my overall protein in each 24-hour urine for the past year includes a higher than normal level of overall protein at around 200 mg. I do not have diabetes or high blood pressure, nobody can ever really say why I have proteinuria, I guess they don't want me to worry, but my guess is it is due to the increasing M spike resulting in excessive protein in urine overall. BJP has only been shown via IFE urine during my 1st workup at the major cancer center last spring. My UPEP from last week is still pending. Hopefully it will remain clear of a BJP though it was higher than ever in the level of overall protein and the globulin level is usually higher than normal and albumin lower than normal (not by a lot).
One item that I guess I worry with a little besides the increasing M spike, FLC ratio each visit is that my IgM level continues to drop below normal. When it 1st fell below normal last August 2014 they said it would likely be temporary and rise into normal levels once again, where instead it drops a little each visit and remains in the lower mid 20's. Dating back to my local specialist they have always initially pointed out it was a good sign that my good immunoglobulin levels were normal so when a year later that changes for the negative it feels a little weird.
Something that always stands out if I ever research smoldering multiple myeloma is immunoparesis (in my case low IgM) and 95% or more plasma cells as aberrant (my level is 91%). I'd feel better if my uninvolved immunoglobulins were all within normal limits and the aberrant % a bit lower, as those are two items that seem to always appear as noted in smoldering myeloma articles towards a higher risk for progression (though the other items I'm clear as my FLC ratio is within normal limits and overall plasma cell % on the low end). Hopefully I will never need a BMB anytime soon but if so the % will not have increased very much.
As you said, hopefully my M-spike levels out and I can sit for a while without any changes while the smoldering myeloma vaccine trials continue.
Thanks a lot for reading hope all is well as can be with your case.
FYI:
Hemoglobin - was under 12 last Fall but now 14.2 following testosterone HRT
Creatinine - no real change, at the lower end of normal
Calcium levels - consistently in the middle range around 9.2
B2 microglobulin - steady always at 1.5, never changes thankfully
Kappa FLC - Apr 2014 - 9.91 , rises each visit, now as of Oct 2015 : 15.8
Lambda FLC - Apr 2014: 12.6 , slightly down each visit, now Oct 2015 - 11.1
K/L ratio - 0.7 Apr 2014 upwards each visit, now Oct 2015 - 1.36
M spike: August 2010 - 0.100 g/dL
*When the M spike was first found, routine blood work was ran regarding extreme knee swelling. An SPEP turned up a "faint paraprotein." I was referred to a hematologist and she thought that with the very low level and my age (late 30's) that it was not a true issue but rather a temporary response – my body producing the temporary M protein in response to the extreme knee swelling / fluid that I experienced. I was on crutches for many months following arthoscopic knee surgery that was supposed to repair possible meniscus damage, but in reality once in surgery nothing was found or done though afterwards my knee was even more swollen than previously and my entire leg became mega swollen and painful. I couldn't move my knee / leg at all for weeks w/o extreme pain, and I required ultrasounds daily checking for blood clots, draining the knee of 40 - 50 cc of fluid then and even now - the fluid returns, The major cancer center has performed 2 MRI's on my knee last year and a bone bruise is present as it was also shown on an MRI from 2011, apparently from pressure from the extreme fluid. I was told in 2011 the bone bruise which is actually on the edge of the tibia would clear but it remains. There is no link to multiple myeloma via the two MRI's with contrast at the cancer center, so I deal with the pain / swelling to this day which nobody can explain, from ortho, rheumatology, now oncology ....
The orig local hem/onc specialist didn't ever follow up with me. As noted above she thought my faint paraprotein was just due to inflammation. It wasn't until early 2013 when my wife was diagnosed with cancer and I was reading up on her leukemia that I came across MGUS / multiple myeloma and realized that I should have been checked again to see if my M spike was perm or not. Then I began to see my wife's local hem/onc doctor and ultimately moved along with her my care to the specialty cancer center later in 2013 once our insurance was cleared to do so.
M spike:
Summer 2013: 0.375
Spring 2014: 0.400 (by mistake i listed .425 earlier)
End of 2014: 0.700
Jan & April 2015: still 0.700
Oct 2015 presently 0.900
SERUM PRO ELECT ALPHA 1 for near 1 year has been slightly high at 0.3 g/dL
I've had major workups summer and fall of 2013 locally and also spring, fall, winter, of 2014 at the major cancer center as well as Jan, April and this month for 2015. Each time a ton of labs are performed and as I noted I've had a couple of full body PET CT scans, MRI's (full spinal, 2x knee) and a skeletal survey locally in 2013 and April 2014 at the cancer center as well as just now at the cancer center once again.
Outside of the initial skeletal survey turning up possible myeloma lesions, which resulted in my 1st BMB summer 2013 locally. Turned out possible lytic lesions on the skull were venous lakes, but that 1st survey and M-spike rising from 0.100 to 0.375 prompted a local hematologist to perform my 1st BMB, which they counted as 7% plasma cells and the cancer center a year later reading the results as 5% and then performing their own BMB last spring which put me into the 10% plasma cell range and since then increasing M spike that's doubled since that last BMB spring 2014.
Sorry this is so lengthy but there are so many tests - pieces - easily I must have actually over 400 lab values just at the major cancer center if sort by all types (cbc, special chemistry, pathology, radiology, etc). My wife's luekemia, while it requires more BMB's, doesn't include nearly as many tests as my inactive condition!
I really am not worried at all that I have an active condition at this time. Totally clear as free of CRAB criteria though I wish the proteinuria didn't exist (200 mg protein each 24-hour urine) and the following items stop trending the "wrong" way:
- Increasing K/L ratio (also free kappa rising from 9.9 to 15.8)
- M spike doubling just in the past year (since the 10% PC marrow finding the M spike is now 2x the level that it was when I was tagged as borderline smoldering multiple myeloma. I was hoping the M spike would level out, not double, making me sometimes wonder what would my PC % be at this moment with the much higher M spike if it was 10% when the M spike was only .400)
- Dropping IgM value - immunoparesis, as it is. Always if performing a search immunoparesis is associated with a higher level of risk for progression
- Total IgG level - M spike = Healthy IgG - is under 400 which is also below normal
It's just weird sitting back and as the past couple of years go by see the M spike actually nearly triple all while knowing the 92% aberrant plasma cells were found last year (while the M spike was much lower than present). I guess seeing my wife have an active cancer (leukemia) it also makes me see the effects of a blood cancer 1st hand. Our lives have totally changed from never going to the doctor very often to an incredible amount of tests, appointments, etc for both of us the past 2 years and my wife being on a perm oral chemo for life which causes extreme side effects more often than not (nausea, low grade temp, bone pain).
The whole thing freaks me out a little LOL, but in a couple of weeks I'll forget about my deal now that I have graphed my latest labs and just try not to think about it (it's difficult to try to stay educated but not worry too much ...) until my next workup. Most of all I'm thankful that my case is NOT active right now and cross my fingers that my FLC ratio, M spike, IgM, all remain the same or somehow improve if that's possible.
Sorry for the long post. Again, there's so many tests / results etc I could easily fill up this post with pages with for all types of reports below - maybe 400 - 500 total values
Report types:
Cytogenetics
Special Chemistry
Microbiology
Flow Cytometry
Hematology
Radiology
Pathology
Molecular Diag
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Smoldering multiple myeloma or MGUS?
Hi Pinball,
Given how many tests and procedures you've had done, I can see how it would be difficult to sort through all the data and figure out how best to interpret all the results.
One thing that you may find helpful is to move away from asking yes/no questions like "Am I MGUS?" or "Do I have anemia or not?". Those questions don't really provide you with much information you can use to form expectations about where your disease is heading.
What you really need to understand is the direction your lab results are heading and, even more importantly, how fast (or slow) the results are heading in that direction.
Think of it this way. If you're a pilot trying to land a plane, you don't just need to know the answer to the question "Am I in the sky, or am I on land?" Instead, you need to know how far above land you are, whether you are heading up or down, and how fast you are heading up or down.
You also wouldn't want to know just whether or not there is wind outside. Instead, you'd want to know how strong the wind is, from what direction it is coming, etc.
So, if you haven't done it already, I would plot out over time your M-spike, free light chain (kappa, lambda, and kappa/lambda ratio), IgG, IgA, IgM, hemoglobin, calcium, and creatinine levels. Then I would see how each of these results are changing, if at all, and whether they are changing quickly or slowly.
By looking at the trends in these key values, you should get a better overall sense of what your disease is doing.
You can add a few other results to the list, if you think some are important. The point, though, is to focus on the key results that will tell you the most about what your disease is doing, and get a sense of the direction the results are heading and how fast or slow they are changing.
This isn't much different, by the way, than what Multibilly has been doing as he tracks his smoldering myeloma. You can see some of the data he plots in postings in the fenofibrate thread here in the forum.
I agree, by the way, that it's useful to track your uninvolved immunoglobulin levels, as MGUS and myeloma can suppress them as the disease evolves.
A couple of other stray thoughts ...
The story about your knee had me wondering if you've ever had it checked to see if perhaps there is a plasmacytoma there. Apparently, though, neither MRIs or PET scans have shown anything, so I guess it will have to remain a mystery. If you haven't already done it, though, I would double check to make sure the PET scan did in fact image the knee.
I found the information about the "lytic" lesions in your skull interesting. There are several postings by doctors here in the forum explaining how x-rays of the skull can show what look like lytic lesions, when the "lesions" are in fact venous lakes. Your case confirms that.
Good luck!
Given how many tests and procedures you've had done, I can see how it would be difficult to sort through all the data and figure out how best to interpret all the results.
One thing that you may find helpful is to move away from asking yes/no questions like "Am I MGUS?" or "Do I have anemia or not?". Those questions don't really provide you with much information you can use to form expectations about where your disease is heading.
What you really need to understand is the direction your lab results are heading and, even more importantly, how fast (or slow) the results are heading in that direction.
Think of it this way. If you're a pilot trying to land a plane, you don't just need to know the answer to the question "Am I in the sky, or am I on land?" Instead, you need to know how far above land you are, whether you are heading up or down, and how fast you are heading up or down.
You also wouldn't want to know just whether or not there is wind outside. Instead, you'd want to know how strong the wind is, from what direction it is coming, etc.
So, if you haven't done it already, I would plot out over time your M-spike, free light chain (kappa, lambda, and kappa/lambda ratio), IgG, IgA, IgM, hemoglobin, calcium, and creatinine levels. Then I would see how each of these results are changing, if at all, and whether they are changing quickly or slowly.
By looking at the trends in these key values, you should get a better overall sense of what your disease is doing.
You can add a few other results to the list, if you think some are important. The point, though, is to focus on the key results that will tell you the most about what your disease is doing, and get a sense of the direction the results are heading and how fast or slow they are changing.
This isn't much different, by the way, than what Multibilly has been doing as he tracks his smoldering myeloma. You can see some of the data he plots in postings in the fenofibrate thread here in the forum.
I agree, by the way, that it's useful to track your uninvolved immunoglobulin levels, as MGUS and myeloma can suppress them as the disease evolves.
A couple of other stray thoughts ...
The story about your knee had me wondering if you've ever had it checked to see if perhaps there is a plasmacytoma there. Apparently, though, neither MRIs or PET scans have shown anything, so I guess it will have to remain a mystery. If you haven't already done it, though, I would double check to make sure the PET scan did in fact image the knee.
I found the information about the "lytic" lesions in your skull interesting. There are several postings by doctors here in the forum explaining how x-rays of the skull can show what look like lytic lesions, when the "lesions" are in fact venous lakes. Your case confirms that.
Good luck!
-
Jonah
Re: Smoldering multiple myeloma or MGUS?
Hi Pinball,
May I ask a question regarding your comment:
My husband is diagnosed as MGUS but he will be doing a BMB tomorrow as a result of the xrays showing 2 possible myeloma lesions/venous lakes on his skull. He is IgG kappa:
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 detected. One IgG kappa monoclonal 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
UPEP: No monoclonal proteins detected. Immunofixation studies revealed a free kappa and an IgG kappa monoclonal protein(s) migrating in the gamma region. Total Protein 50 mg 24 hour.
Heamotogist says his M-spike is 1.0 - but I don't see anything that gives that number ... very strange.
My question is: How were they able to differentiate that your 'possible lytic lesions on the skull' were in fact normal venous lakes?
I am quite concerned regarding this ...
Thank you
May I ask a question regarding your comment:
Outside of the initial skeletal survey turning up possible myeloma lesions, which resulted in my 1st BMB summer 2013 locally. Turned out possible lytic lesions on the skull were venous lakes
My husband is diagnosed as MGUS but he will be doing a BMB tomorrow as a result of the xrays showing 2 possible myeloma lesions/venous lakes on his skull. He is IgG kappa:
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 detected. One IgG kappa monoclonal 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
UPEP: No monoclonal proteins detected. Immunofixation studies revealed a free kappa and an IgG kappa monoclonal protein(s) migrating in the gamma region. Total Protein 50 mg 24 hour.
Heamotogist says his M-spike is 1.0 - but I don't see anything that gives that number ... very strange.
My question is: How were they able to differentiate that your 'possible lytic lesions on the skull' were in fact normal venous lakes?
I am quite concerned regarding this ...
Thank you
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Smoldering multiple myeloma or MGUS?
brandyjoco asked:
Hi brandyjoco,
(Sorry for the lengthy reply - to see my "venous lakes / lytic lesion" results that appeared on my very 1st of many diagnostic tests, see the bottom of this reply)
We were quite concerned and even shocked when my initial 2013 workup which included an SPEP, UPEP, skeletal survey, FLC testing came back not "too bad" with an M spike of 0.375 g/dL IgG kappa and pretty much everything else was "ok" - then the x-ray results turned up the possible lytic lesions.
Mainly because of the possible lytic lesions of the skull, our hematologist performed a BMB. It was optional, but as he was recently beginning to treat my wife for her recently diagnosed leukemia, he knew that we wanted to be assured that I was fine. That BMB summer of 2013 resulted in 7% plasma cell count per the local hospital's review (the cancer center that we now go to read the same slides as 5%, by the way) – just trying to paint a pic of what we were seeing at that time – when the possible lytic lesions were found. As the BMPC % wasn't too high and the M spike not very high at the time and FLC ratio within normal limits and all else 'ok', the next step was repeat skull series of xrays.
The 2nd set of skull xrays a month later did not result in any possible lytic lesion, nor did it even indicate venous lakes. I couldn't understand how such drastic results could appear in 2 surveys within a close period of time. The hematologist explained that often the radiologists play it very safe and will call out anything even remotely possible as a lytic lesion. As far as the venous lakes (that's what had to have been seen on the initial xray, as I have had no myeloma related bone issues even to date, including 2 full body PET CT's in the past year, and a skeletal survey this month), nothing has turned up on any of the future surveys. Also I had a skeletal survey spring 2014 at the time of my 1st full body PET CT .
So of the skeletal surveys in 2013, 2014, this month, and an extra skull series in 2013 after the initial skull series, plus full body PET CT's spring 2013 and spring of this year, only the 1st skeletal survey (xray) indicated anything out of the ordinary ... the possible lytic lesions in the skull. I'll paste those results below. The only items on any scan that have been abnormal were not serious: tibia bone bruise per 2x knee MRI's last year. and full cervical / spinal MRI this January indicated modic endplate changes, severe stenosis, and osteophyte complex - which none are related to the skull.
Thinking back, my orig hematologist said on the venous lakes not even appearing on the 2nd set of xrays (skull series only following the original full body review) that the skull xrays when taken at certain angles can reveal possible thinning areas such as venous lakes and the initial xrays must have just turned out to position my skull in such a way that the venous lakes were present to some degree and again to be extra cautious as the radiologist was to rule out myeloma changes they called out the possible lytic lesions out of an abundance of caution.
Good luck with your husband's testing and may followup diagnostics be similar to mine in that the supposed possible lytic lesion never appears after all.
On the M spike, I also do not see anything on the top figures (blood / serum testing). Some folks do not have a serum M spike, it's rare but takes place. I'd ask the doctor upon followup to explain it a bit more (such a nonsecretory type of monoclonal protein issues). Perhaps the peak found in the UPEP is where the 1.0 figure is derived from. Normal / common results are very clear on an SPEP serum as calling out the M spike and it's value such as "0.900 g/dL" .
Again good luck with the testing. There's so much related to this condition than my wife's leukemia, which is pretty much detected via BMB or PCR. It's pretty straightforward compared to myeloma, but just as serious and difficult for her to go thru. We're both very young for both of our issues and I'm so thankful that my case is inactive but the rate that my M-spike is progressing in the past year and now peak found in the UPEP as well is a little overwhelming. But I know that everything for me could also finally level out and remain nonevolving for once which is the view I'm trying to take. Watching and waiting can be a bit rough but once I get thru my workup's I put this aside, stop researching, and concentrate on getting my wife thru her leukemia fight.
Here's my initial venous lakes / possible lytic lesion results from 2013 - I'm sure often, as in my case, initial results such as below end up fine upon retesting:
Narrative:
There are two or 3 small subtle lucencies within the calvarium. One of these has a somewhat punched out appearance and myelomatous involvement could not be excluded.
Impression
A few punctate foci are seen within the calvarium and while these could represent venous lakes, mild myelomatous involvement in this region cannot be excluded.
The remainder of the bony skeleton is unremarkable except for degenerative changes.
How were they able to differentiate that your 'possible lytic lesions on the skull' were in fact normal venous lakes?
I am quite concerned regarding this ...
Hi brandyjoco,
(Sorry for the lengthy reply - to see my "venous lakes / lytic lesion" results that appeared on my very 1st of many diagnostic tests, see the bottom of this reply)
We were quite concerned and even shocked when my initial 2013 workup which included an SPEP, UPEP, skeletal survey, FLC testing came back not "too bad" with an M spike of 0.375 g/dL IgG kappa and pretty much everything else was "ok" - then the x-ray results turned up the possible lytic lesions.
Mainly because of the possible lytic lesions of the skull, our hematologist performed a BMB. It was optional, but as he was recently beginning to treat my wife for her recently diagnosed leukemia, he knew that we wanted to be assured that I was fine. That BMB summer of 2013 resulted in 7% plasma cell count per the local hospital's review (the cancer center that we now go to read the same slides as 5%, by the way) – just trying to paint a pic of what we were seeing at that time – when the possible lytic lesions were found. As the BMPC % wasn't too high and the M spike not very high at the time and FLC ratio within normal limits and all else 'ok', the next step was repeat skull series of xrays.
The 2nd set of skull xrays a month later did not result in any possible lytic lesion, nor did it even indicate venous lakes. I couldn't understand how such drastic results could appear in 2 surveys within a close period of time. The hematologist explained that often the radiologists play it very safe and will call out anything even remotely possible as a lytic lesion. As far as the venous lakes (that's what had to have been seen on the initial xray, as I have had no myeloma related bone issues even to date, including 2 full body PET CT's in the past year, and a skeletal survey this month), nothing has turned up on any of the future surveys. Also I had a skeletal survey spring 2014 at the time of my 1st full body PET CT .
So of the skeletal surveys in 2013, 2014, this month, and an extra skull series in 2013 after the initial skull series, plus full body PET CT's spring 2013 and spring of this year, only the 1st skeletal survey (xray) indicated anything out of the ordinary ... the possible lytic lesions in the skull. I'll paste those results below. The only items on any scan that have been abnormal were not serious: tibia bone bruise per 2x knee MRI's last year. and full cervical / spinal MRI this January indicated modic endplate changes, severe stenosis, and osteophyte complex - which none are related to the skull.
Thinking back, my orig hematologist said on the venous lakes not even appearing on the 2nd set of xrays (skull series only following the original full body review) that the skull xrays when taken at certain angles can reveal possible thinning areas such as venous lakes and the initial xrays must have just turned out to position my skull in such a way that the venous lakes were present to some degree and again to be extra cautious as the radiologist was to rule out myeloma changes they called out the possible lytic lesions out of an abundance of caution.
Good luck with your husband's testing and may followup diagnostics be similar to mine in that the supposed possible lytic lesion never appears after all.
On the M spike, I also do not see anything on the top figures (blood / serum testing). Some folks do not have a serum M spike, it's rare but takes place. I'd ask the doctor upon followup to explain it a bit more (such a nonsecretory type of monoclonal protein issues). Perhaps the peak found in the UPEP is where the 1.0 figure is derived from. Normal / common results are very clear on an SPEP serum as calling out the M spike and it's value such as "0.900 g/dL" .
Again good luck with the testing. There's so much related to this condition than my wife's leukemia, which is pretty much detected via BMB or PCR. It's pretty straightforward compared to myeloma, but just as serious and difficult for her to go thru. We're both very young for both of our issues and I'm so thankful that my case is inactive but the rate that my M-spike is progressing in the past year and now peak found in the UPEP as well is a little overwhelming. But I know that everything for me could also finally level out and remain nonevolving for once which is the view I'm trying to take. Watching and waiting can be a bit rough but once I get thru my workup's I put this aside, stop researching, and concentrate on getting my wife thru her leukemia fight.
Here's my initial venous lakes / possible lytic lesion results from 2013 - I'm sure often, as in my case, initial results such as below end up fine upon retesting:
Narrative:
There are two or 3 small subtle lucencies within the calvarium. One of these has a somewhat punched out appearance and myelomatous involvement could not be excluded.
Impression
A few punctate foci are seen within the calvarium and while these could represent venous lakes, mild myelomatous involvement in this region cannot be excluded.
The remainder of the bony skeleton is unremarkable except for degenerative changes.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Smoldering multiple myeloma or MGUS?
Hi Jonah,
I posted the results of my initial skeletal survey calling out the possible 2013 skull lytic lesion / venous lakes which turned up on the very 1st skeletal survey but never again on a followup skull series of xrays later that year and TWO full skeletal surveys since (one each 2014 and this year) - plus 2 full body PET CT's that seem to have included knee - as well as TWO knee specific MRI's - oh and also a couple of ultrasounds of my lower legs due to some swelling that began last Fall - I've had a great deal of xrays / scans in the past couple of years so that I am not worried out any lytic lesions I also had a full spinal set of MRI's early this year.
Heck also last year when I was slightly anemic I also had several additional labs and benign hematology consult (which the anemia was simply due to low testosterone - thankfully I didn't have an additional BMB as they tried to find root cause of the low red cell count - definitely in my case though it wasn't expected and unlikely by benign hematology and endocrine specialists that the low testosterone was the cause for anemia it was - low testosterone resulted in low erythopoetin and thus low H&H as my kidneys weren't stimulating red cell growth to the full degree) - the H&H rise was welcome.
I've also BNP checked as well as a cardiac ultrasound (due to the lower leg swelling).
Throw in a fat pad abdominal biopsy and VEGF check for POEMS (leg swelling, low testosterone - POEMS can apparently cause androgenic issues) in addition to the tons of serum / urine testing for each workup / visit - I definitely feel that I"m receiving more than my fair share of diagnostic workup activity - of all of the testing above 90% has been in the past year since moving my case to a major research / cancer center.
On the knee - no doctor can explain the serious swelling or the bone bruise that remains constant on MRI's of the knee in 2011 and 2x MRI's at the major cancer center last year when I began to be treated there as we moved to the specialty center due to my wife's leukemia care. Bone bruises normally heal and also i never did have an injury of any sort to cause a bone bruise of the lower proximal tibia. I've just gotten used to the knee pain / swelling and with all of my wife's leukemia / stem cell transplant (workup - not an actual transplant yet) related appointments and my myeloma workups - I'll never get around to getting my knee checked out, ha. I'm sure the cancer center last year was checking for a plasmacytoma or lesion by performing 2 MRI's of my knee last year as they took on my case. As it's a very large teaching / research center I'm sure my case is sort of interesting to them.
I'm confident that my case is not active - all clear on CRAB criteria - calcium, H&H and other items (renal panel, platelets etc) are fine.
But the doubling of my M spike in the past year considering that when my M spike was 1/2 of the current value 1 year ago my BMPC was at 10% - it just feels like the M spike is progressing a bit faster than I expected (also watching my IgM drop greatly and now well below normal as my M spike rose - that was weird - it doesn't seem that too many MGUS folks have true immunoparesis).
It's awesome that 91% of my plasma cells were aberrant on my 2014 / most recent BMB and not 95% or more as well as it's nice that my BMPC % while right at the smoldering level isn't anything crazy high.
New item - result arrived from this month's workup - 1st ever UPEP "peak" found:
I guess one other item that's also now a negative is that for the 1st time ever now I have a UPEP result indicating a monoclonal spike (IFE urine confirmed Bence Jones kappa proteinuria last year but UPEP's have been clear until my UPEP result from earlier this month just appeared - there's no value, only that a peak is noted so I guess that's a plus <there's not enough monoclonal protein in the urine to measure the amount though the peak appeared in the gamma region>).
Continuous proteinuria of 200mg , hi globulin / low albumin:
The fact too that I have 200 mg average proteinuria on each 24-hour urine and my albumin % is always a little low and globulin high - hopefully over time the constant excess protein in the urine doesn't cause any renal issues - no doctor ever has answer for the reason for the excess protein in the urine or how it may be prevented - I guess it just comes with the territory and hopefully the BJP appearing , peak now found on the UPEP isn't that big of a deal.
I have all of my values charted in Excel & basically though there's so many tests - I can visualize the results easily - even if I don't review them often - my posts ramble on but not so much b/c I'm lost but b/c there's so many items and I can easily recall all of the tests / values and there's so much to consider - it's difficult for me to write a short post as there's in my case at least a ton of testing in the past 1 year mostly, haha.
Definitely thankful that b2m, calcium, creatinine, and so many other values are fine - if again we can just get the M spike to stabilize, BJP to vanish, immunoparesis to improve it would seem then like progression is so far down the line that I'd forget about it.
What's funny is think I have seen a post before by someone called "Multibilly" (you mentioned that person actually) and the name reminds me each time of "multi ball" which is a pinball feature
I could rattle off my test results by memory of all of the major items - not sure if that's impressive or just scary - the good thing is a couple of weeks after all of my results are fully avail each workup - I forget about them until a few days prior to my next appointment.
Thanks for the replies and actually perhaps reading thru my lengthy posts
Here's a small outline of my major test results since my 1st SPEP was done (related to the knee - ordered by a rheumatoid specialist - too bad my M spike isn't still only a "faint" para protein with a value of .100 g/dL and likely a "temp" condition as my initial hematology visit in 2010 noted <they never followed up>):
Falll 2010:
M spike - .100 g/dL
UPEP - neg
Other tests not performed, I was never tested again until following up on my own in 2013 after learning of MGUS / myeloma and realizing I should have been followed up in 2010.
June 2013
M spike 0.375 g/dL IgG kappa
UPEP - neg
Neg Urine IFE (no BJP)
BMB 5% PC per cancer center reading, 7% per local reading
K/L ratio 0.7
April 2014
M spike 0.400 g/dL
UPEP - neg
BMB 10% PC (91% aberrant)
IFE urine - positive for a Bence Jones kappa proteinuria
K/L ratio 0.9
Late 2014 - Immunoparesis present - IgM dropped into mid 20's as remains to this day
Oct 2015
M spike 0.900 g/dL
UPEP - Peak found in gamma region
BMB - not performed
K/L ratio 1.3
Also UPEP this month: Globulin is below normal and Globulin high
Note also that for every 24 urine result I have had excessive protein in general (200 mg average) since 2010.
I posted the results of my initial skeletal survey calling out the possible 2013 skull lytic lesion / venous lakes which turned up on the very 1st skeletal survey but never again on a followup skull series of xrays later that year and TWO full skeletal surveys since (one each 2014 and this year) - plus 2 full body PET CT's that seem to have included knee - as well as TWO knee specific MRI's - oh and also a couple of ultrasounds of my lower legs due to some swelling that began last Fall - I've had a great deal of xrays / scans in the past couple of years so that I am not worried out any lytic lesions
I also had a full spinal set of MRI's early this year. Heck also last year when I was slightly anemic I also had several additional labs and benign hematology consult (which the anemia was simply due to low testosterone - thankfully I didn't have an additional BMB as they tried to find root cause of the low red cell count - definitely in my case though it wasn't expected and unlikely by benign hematology and endocrine specialists that the low testosterone was the cause for anemia it was - low testosterone resulted in low erythopoetin and thus low H&H as my kidneys weren't stimulating red cell growth to the full degree) - the H&H rise was welcome.
I've also BNP checked as well as a cardiac ultrasound (due to the lower leg swelling).
Throw in a fat pad abdominal biopsy and VEGF check for POEMS (leg swelling, low testosterone - POEMS can apparently cause androgenic issues) in addition to the tons of serum / urine testing for each workup / visit - I definitely feel that I"m receiving more than my fair share of diagnostic workup activity - of all of the testing above 90% has been in the past year since moving my case to a major research / cancer center.
On the knee - no doctor can explain the serious swelling or the bone bruise that remains constant on MRI's of the knee in 2011 and 2x MRI's at the major cancer center last year when I began to be treated there as we moved to the specialty center due to my wife's leukemia care. Bone bruises normally heal and also i never did have an injury of any sort to cause a bone bruise of the lower proximal tibia. I've just gotten used to the knee pain / swelling and with all of my wife's leukemia / stem cell transplant (workup - not an actual transplant yet) related appointments and my myeloma workups - I'll never get around to getting my knee checked out, ha. I'm sure the cancer center last year was checking for a plasmacytoma or lesion by performing 2 MRI's of my knee last year as they took on my case. As it's a very large teaching / research center I'm sure my case is sort of interesting to them.
I'm confident that my case is not active - all clear on CRAB criteria - calcium, H&H and other items (renal panel, platelets etc) are fine.
But the doubling of my M spike in the past year considering that when my M spike was 1/2 of the current value 1 year ago my BMPC was at 10% - it just feels like the M spike is progressing a bit faster than I expected (also watching my IgM drop greatly and now well below normal as my M spike rose - that was weird - it doesn't seem that too many MGUS folks have true immunoparesis).
It's awesome that 91% of my plasma cells were aberrant on my 2014 / most recent BMB and not 95% or more as well as it's nice that my BMPC % while right at the smoldering level isn't anything crazy high.
New item - result arrived from this month's workup - 1st ever UPEP "peak" found:
I guess one other item that's also now a negative is that for the 1st time ever now I have a UPEP result indicating a monoclonal spike (IFE urine confirmed Bence Jones kappa proteinuria last year but UPEP's have been clear until my UPEP result from earlier this month just appeared - there's no value, only that a peak is noted so I guess that's a plus <there's not enough monoclonal protein in the urine to measure the amount though the peak appeared in the gamma region>).
Continuous proteinuria of 200mg , hi globulin / low albumin:
The fact too that I have 200 mg average proteinuria on each 24-hour urine and my albumin % is always a little low and globulin high - hopefully over time the constant excess protein in the urine doesn't cause any renal issues - no doctor ever has answer for the reason for the excess protein in the urine or how it may be prevented - I guess it just comes with the territory and hopefully the BJP appearing , peak now found on the UPEP isn't that big of a deal.
I have all of my values charted in Excel & basically though there's so many tests - I can visualize the results easily - even if I don't review them often - my posts ramble on but not so much b/c I'm lost but b/c there's so many items and I can easily recall all of the tests / values and there's so much to consider - it's difficult for me to write a short post as there's in my case at least a ton of testing in the past 1 year mostly, haha.
Definitely thankful that b2m, calcium, creatinine, and so many other values are fine - if again we can just get the M spike to stabilize, BJP to vanish, immunoparesis to improve it would seem then like progression is so far down the line that I'd forget about it.
What's funny is think I have seen a post before by someone called "Multibilly" (you mentioned that person actually) and the name reminds me each time of "multi ball" which is a pinball feature
I could rattle off my test results by memory of all of the major items - not sure if that's impressive or just scary - the good thing is a couple of weeks after all of my results are fully avail each workup - I forget about them until a few days prior to my next appointment.
Thanks for the replies and actually perhaps reading thru my lengthy posts
Here's a small outline of my major test results since my 1st SPEP was done (related to the knee - ordered by a rheumatoid specialist - too bad my M spike isn't still only a "faint" para protein with a value of .100 g/dL and likely a "temp" condition as my initial hematology visit in 2010 noted <they never followed up>):
Falll 2010:
M spike - .100 g/dL
UPEP - neg
Other tests not performed, I was never tested again until following up on my own in 2013 after learning of MGUS / myeloma and realizing I should have been followed up in 2010.
June 2013
M spike 0.375 g/dL IgG kappa
UPEP - neg
Neg Urine IFE (no BJP)
BMB 5% PC per cancer center reading, 7% per local reading
K/L ratio 0.7
April 2014
M spike 0.400 g/dL
UPEP - neg
BMB 10% PC (91% aberrant)
IFE urine - positive for a Bence Jones kappa proteinuria
K/L ratio 0.9
Late 2014 - Immunoparesis present - IgM dropped into mid 20's as remains to this day
Oct 2015
M spike 0.900 g/dL
UPEP - Peak found in gamma region
BMB - not performed
K/L ratio 1.3
Also UPEP this month: Globulin is below normal and Globulin high
Note also that for every 24 urine result I have had excessive protein in general (200 mg average) since 2010.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Smoldering multiple myeloma or MGUS?
Hi Pinball,
Thank you for your thorough analysis of your numbers. My husband has his first bone marrow (BMB) biopsy results on Friday, November 6. He currently has IgG kappa with a 1.0 g/dL M spike. He is quite healthy but there were 2 ill defined lucent areas (possible venous lakes) on his xray and a minor anterior wedge between the L1/L2 vertebrae. He does have slightly low WBC. IgG kappa showed up on the UPEP. Being a male and 54, the oncologist is suspicious of the L1/L2 issue and called for the BMB and suggested he may be smoldering. We will know the next step after the BMB results.
I so appreciate this forum and read everything I can.
Thanks! Brandyjoco
Thank you for your thorough analysis of your numbers. My husband has his first bone marrow (BMB) biopsy results on Friday, November 6. He currently has IgG kappa with a 1.0 g/dL M spike. He is quite healthy but there were 2 ill defined lucent areas (possible venous lakes) on his xray and a minor anterior wedge between the L1/L2 vertebrae. He does have slightly low WBC. IgG kappa showed up on the UPEP. Being a male and 54, the oncologist is suspicious of the L1/L2 issue and called for the BMB and suggested he may be smoldering. We will know the next step after the BMB results.
I so appreciate this forum and read everything I can.
Thanks! Brandyjoco
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
12 posts
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