Hi Ginny,
I'm not a doc, so please verify with yours.
From your other post, it appears that you have an M-spike of 1.3 g/dl (which is a fairly low M-spike).
You have just a slightly elevated kappa free light chain value, which makes your kappa/lambda free light chain ratio just a tad out out of range.
Your calcium level isn't elevated, which is also good news from a monoclonal gammopathy perspective. The other things you want to keep an eye on are your creatinine level from your metabolic panel and your hemoglobin level from your CBC test.
But all this would seem to indicate a case of MGUS. MGUS only has about a 1%/year probability of progressing to symptomatic multiple myeloma.
Given your out-of-range free light chain numbers, your hematologist may suggest getting a bone marrow biopsy at some point in the future. Again, you should verify all this with your hematologist.
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Re: Referred to hematologist / oncologist
Last edited by Multibilly on Thu Nov 26, 2015 5:12 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Referred to hematologist / oncologist
Thank you, Multibilly. THANK YOU.
Happy Thanksgiving!
Happy Thanksgiving!
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Okay, here's my results from the 24-hour urine test. They just came in. I think everything looks good, but I would love if somebody would confirm for me.
Protein/g creat level (Protein, total, 24 hr urine, mg/g creat) 52 mg/g creat
Lab Test Result Range
Total volume, urine
(Total volume, urine, mL/24hrs) 900 mL/24hrs
(Collection time, hr) 24 hr
(Immunofixation, urine interpretation) Results Below
(Creatinine, timed, urine) 133.4 mg/dL
UPE albumin (Albumin, UPE) 100%
UPE alpha 1 globulin (Alpha 1 globulin, UPE) 0%
UPE alpha 2 globulin (Alpha 2 globulin, UPE) 0%
UPE beta globulin (Beta globulin, UPE) 0%
UPE gamma globulin (Gamma globulin, UPE) 0%
(UPE IFE 24 hr interpretation) Results Below
(Immunofixation, 24 hr urine) Normal
(Creatinine, timed, urine, mg/specimen) 1201 mg/specimen 600-1800
(Protein, timed urine, mg/specimen) 63 mg/specimen 50-80
(Protein, 24 hr urine, mg/dL) 7 mg/dL 0-12
(Paraprotein band, urine) None
(Paraprotein band, 24 hr urine) None
So, in my limited research experience, I think this looks pretty good, right?
But there's still the matter of
K/L light chain ratio: 2.47
Kappa light chain: 3.137 mg/dl
which were both elevated/out of range.
So now I guess I'm just on the MGUS waiting wagon?
Protein/g creat level (Protein, total, 24 hr urine, mg/g creat) 52 mg/g creat
Lab Test Result Range
Total volume, urine
(Total volume, urine, mL/24hrs) 900 mL/24hrs
(Collection time, hr) 24 hr
(Immunofixation, urine interpretation) Results Below
(Creatinine, timed, urine) 133.4 mg/dL
UPE albumin (Albumin, UPE) 100%
UPE alpha 1 globulin (Alpha 1 globulin, UPE) 0%
UPE alpha 2 globulin (Alpha 2 globulin, UPE) 0%
UPE beta globulin (Beta globulin, UPE) 0%
UPE gamma globulin (Gamma globulin, UPE) 0%
(UPE IFE 24 hr interpretation) Results Below
(Immunofixation, 24 hr urine) Normal
(Creatinine, timed, urine, mg/specimen) 1201 mg/specimen 600-1800
(Protein, timed urine, mg/specimen) 63 mg/specimen 50-80
(Protein, 24 hr urine, mg/dL) 7 mg/dL 0-12
(Paraprotein band, urine) None
(Paraprotein band, 24 hr urine) None
So, in my limited research experience, I think this looks pretty good, right?
But there's still the matter of
K/L light chain ratio: 2.47
Kappa light chain: 3.137 mg/dl
which were both elevated/out of range.
So now I guess I'm just on the MGUS waiting wagon?
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Let me start over now that I've seen my updated results. These things were recently added to my online labs.
Albumin, % - 57%
Alpha-2, % - 9%
Alpha-1, % - 4%
Beta, % - 12%
Gamma, % - 19%
Albumin measurement (Albumin) - 4.3 g/dL (3.0-5.0)
Protein measurement (Total protein) - 7.6 g/dL (6.4-8.2)
Protein electrophoresis interpretation
Electrophoresis, Protein Lab result- Paraprotein detected in gamma region 0.43 gm/dL. No history available for comparison. Recommend immunotyping to confirm monoclonality.
Gamma globulin - 1.5 g/dL (0.6-1.3)
Beta globulin - 0.9 g/dL (0.4-1.0)
Alpha-2 globulin - 0.65 g/dL (0.4-1.0)
Alpha-1 globulin - 0.3 g/dL (0.1-0.3)
Monoclonal spike, g/dL (M-spike, SPE, g/dL) - 0.43 g/dL (0-0)
Immunofixation, serum, interpretation - Monoclonal IgG
Monoclonal IgG kappa band detected.
I just realized my original M-spike was 0.3 g/dL, not 1.3, and that it's now 0.43 g/dL (about two weeks later). Then they added all of the stuff I included above.
I don't know what I'm even asking here anymore. Just sharing because I can, I guess.
Albumin, % - 57%
Alpha-2, % - 9%
Alpha-1, % - 4%
Beta, % - 12%
Gamma, % - 19%
Albumin measurement (Albumin) - 4.3 g/dL (3.0-5.0)
Protein measurement (Total protein) - 7.6 g/dL (6.4-8.2)
Protein electrophoresis interpretation
Electrophoresis, Protein Lab result- Paraprotein detected in gamma region 0.43 gm/dL. No history available for comparison. Recommend immunotyping to confirm monoclonality.
Gamma globulin - 1.5 g/dL (0.6-1.3)
Beta globulin - 0.9 g/dL (0.4-1.0)
Alpha-2 globulin - 0.65 g/dL (0.4-1.0)
Alpha-1 globulin - 0.3 g/dL (0.1-0.3)
Monoclonal spike, g/dL (M-spike, SPE, g/dL) - 0.43 g/dL (0-0)
Immunofixation, serum, interpretation - Monoclonal IgG
Monoclonal IgG kappa band detected.
I just realized my original M-spike was 0.3 g/dL, not 1.3, and that it's now 0.43 g/dL (about two weeks later). Then they added all of the stuff I included above.
I don't know what I'm even asking here anymore. Just sharing because I can, I guess.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Feel free to share, Ginny, I'm just glad it appears you have MGUS rather than multiple myeloma
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Referred to hematologist / oncologist
Your readings are close to Ivwas after five cycle of Chemo (Rev plus Dex). You need to see your Hematologist. Your Kappa is high, your K/L ratio is high. Also creatinine reading is above normal.
I pray that your hemattologist guide you to right path.
Thank you.
I pray that your hemattologist guide you to right path.
Thank you.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Referred to hematologist / oncologist
Thank you. I have my next appointment on the 17th. Just trying to get through the days between now and then! Appreciate the reply.
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Just had my second meeting with my hem-onc. She says I have low-risk MGUS, and that my abnormal FLC ratio (2.47) is just a part of having MGUS. She wants to repeat SPEP every six months, with no mention of further FLC assay.
When I mentioned having read that an abnormal FLC ratio increased my risk of progression and asked if I should have a bone marrow biopsy (BMB) at baseline, she looked at me like I was stupid and shook her head emphatically. I didn't need a BMB, no reason whatsoever to do that, nothing measurable would come of it... no, no, no.
So my question is, is an abnormal FLC ratio "no big deal" as she told me? Should I seek a second opinion?
When I mentioned having read that an abnormal FLC ratio increased my risk of progression and asked if I should have a bone marrow biopsy (BMB) at baseline, she looked at me like I was stupid and shook her head emphatically. I didn't need a BMB, no reason whatsoever to do that, nothing measurable would come of it... no, no, no.
So my question is, is an abnormal FLC ratio "no big deal" as she told me? Should I seek a second opinion?
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GinnyD - Name: Ginny
- When were you/they diagnosed?: MGUS
- Age at diagnosis: 37
Re: Referred to hematologist / oncologist
Hello Ginny:
From my following of other Beacon posters, my best guess is that some of the doctors proscribe a BMB at your level of numbers, some do not, but probably more on the latter. I would think that your doctor's surprise/reaction would probably be surprise that you actually asked for the BMB, which is no fun. So in my view, I would not ask for a second opinion for that reason, alone.
You would like to, at some point along the way, sooner rather than later, make sure you get a myeloma specialist on your team. If your present doctor is not a myeloma specialist, that would be a reason to get another opinion.
From my following of other Beacon posters, my best guess is that some of the doctors proscribe a BMB at your level of numbers, some do not, but probably more on the latter. I would think that your doctor's surprise/reaction would probably be surprise that you actually asked for the BMB, which is no fun. So in my view, I would not ask for a second opinion for that reason, alone.
You would like to, at some point along the way, sooner rather than later, make sure you get a myeloma specialist on your team. If your present doctor is not a myeloma specialist, that would be a reason to get another opinion.
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JPC - Name: JPC
Re: Referred to hematologist / oncologist
My hematologist did prescribe the bone marry biopsy with my numbers at 0.47g/dl.
After two opinions on the biopsy I had a diagnosis of lymphoma, which was then changed to myeloma. At this point we didn't know if it was just smoldering.
A bone scan was ordered when we suspected lymphoma to look at the lymph node involvement. No lymph nodes were involved, but what we found were sclerotic bone lesion, not the typical lytic lesions of myeloma. My scan came back with sclerotic lesions - NO lytic lesions. Again, confusion as to a diagnosis. This is not typical myeloma. Further scans revealed no lytic lesions anywhere, just sclerotic.
Here is the part for you to listen to very closely - another disease that comes with low-burden M-spike numbers and ALSO has neuropathy (you mention that this is something that you have) is called POEMS syndrome. It is exceptionally rare, and can be missed by some doctors if they don't look for the bone lesions. It is, at least, something to mention to your doctor. If found early, this can be treated with good outcomes - I'm not a doctor, but this seems to be what I have read. This is something I would have checked given your neuropathy; it could be driven by POEMS syndrome.
After two opinions on the biopsy I had a diagnosis of lymphoma, which was then changed to myeloma. At this point we didn't know if it was just smoldering.
A bone scan was ordered when we suspected lymphoma to look at the lymph node involvement. No lymph nodes were involved, but what we found were sclerotic bone lesion, not the typical lytic lesions of myeloma. My scan came back with sclerotic lesions - NO lytic lesions. Again, confusion as to a diagnosis. This is not typical myeloma. Further scans revealed no lytic lesions anywhere, just sclerotic.
Here is the part for you to listen to very closely - another disease that comes with low-burden M-spike numbers and ALSO has neuropathy (you mention that this is something that you have) is called POEMS syndrome. It is exceptionally rare, and can be missed by some doctors if they don't look for the bone lesions. It is, at least, something to mention to your doctor. If found early, this can be treated with good outcomes - I'm not a doctor, but this seems to be what I have read. This is something I would have checked given your neuropathy; it could be driven by POEMS syndrome.
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