Hello to everyone!
The last 8 days have been VERY fast. I went from not know anything to thinking I'll be dead inside of a year. My doctor diagnosed me with MGUS on September 26. I was in to see an hematologist / oncologist on Friday. I've had more lab work done, completed a 24-hour urine test and a skeletal survey. I haven't been back to see the oncologist yet.
I like to tell people I'm on the above average side of intelligence without a lick of common sense. I see my lab results and see the worst possible outcome. I can't figure out if I'm MGUS, smoldering, or active, much less Stage I,II,III. Can anyone help me out with this? Here are my numbers:
IgG, Qn, Serum 2693
IgA, Qn, Serum 52
IgM, Qn, Serum 54
Gamma Globulin 2.3
M-Spike 1.9
Albumin 3.6
Serum Kappa 46.66
Serum Lambda 6.36
Kappa/Lambda Free 7.34
B2M 1.760
Any help would be greatly appreciated!
Forums
Re: MGUS, smoldering, or active multiple myeloma?
Hi Sirfer009,
Welcome to the forum.
You really can't say for sure from this data alone what your diagnosis is. But based on this data alone, your doctor would be correct in diagnosing you with IgG-kappa MGUS for the time being - and chances are that is what you likely have given your fairly low M-spike and kappa/lambda ratio. However, you really need the results of your skeletal survey, a bone marrow biopsy and your hemoglobin, creatinine and calcium levels to say otherwise. When you see your oncologist, you should also discuss what your somewhat low IgA level might mean to your prognosis going forward.
BTW, it's always nice if you also include any standard reference ranges with any lab values you may post on this site.
Good luck with your upcoming appointment and let us know how things turn out.
Welcome to the forum.
You really can't say for sure from this data alone what your diagnosis is. But based on this data alone, your doctor would be correct in diagnosing you with IgG-kappa MGUS for the time being - and chances are that is what you likely have given your fairly low M-spike and kappa/lambda ratio. However, you really need the results of your skeletal survey, a bone marrow biopsy and your hemoglobin, creatinine and calcium levels to say otherwise. When you see your oncologist, you should also discuss what your somewhat low IgA level might mean to your prognosis going forward.
BTW, it's always nice if you also include any standard reference ranges with any lab values you may post on this site.
Good luck with your upcoming appointment and let us know how things turn out.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or active multiple myeloma?
Multibilly,
Thanks for the input. I appreciate the help! Here are the levels that I have and the ranges that are showing:
IgG, Qn, Serum 2693 700-1600 (mg/dL)
IgA, Qn, Serum 52 90-386 (mg/dL)
IgM, Qn, Serum 54 20-172 (mg/dL)
Gamma Globulin 2.3 0.4-1.8 (g/dL)
M-Spike 1.9 Not Observed (g/dL)
Albumin 3.6 2.9-4.4 (g/dL)
Serum Kappa 46.66 Nothing Listed
Serum Lambda 6.36 Nothing Listed
Kappa/Lambda Free 7.34 Nothing Listed
B2M 1.760 Nothing Listed
HGB 15.0 13.8 - 18.0 (g/dl)
Creatine 1.15 0.7 - 1.3 (mg/dl)
Calcium 9.0 8.5 - 10.1 (mg/dl)
I'll find out the results of the skeletal survey on Friday. My concern is that, from what I've read, using the ISS staging I'm Stage 1 because of my albumin level is above 3.5 and my B2M is below 3.5. My confusion comes with smoldering. I'm not showing any symptoms(that I know of) so I'm lost as to what I should actually be.
Thanks
Thanks for the input. I appreciate the help! Here are the levels that I have and the ranges that are showing:
IgG, Qn, Serum 2693 700-1600 (mg/dL)
IgA, Qn, Serum 52 90-386 (mg/dL)
IgM, Qn, Serum 54 20-172 (mg/dL)
Gamma Globulin 2.3 0.4-1.8 (g/dL)
M-Spike 1.9 Not Observed (g/dL)
Albumin 3.6 2.9-4.4 (g/dL)
Serum Kappa 46.66 Nothing Listed
Serum Lambda 6.36 Nothing Listed
Kappa/Lambda Free 7.34 Nothing Listed
B2M 1.760 Nothing Listed
HGB 15.0 13.8 - 18.0 (g/dl)
Creatine 1.15 0.7 - 1.3 (mg/dl)
Calcium 9.0 8.5 - 10.1 (mg/dl)
I'll find out the results of the skeletal survey on Friday. My concern is that, from what I've read, using the ISS staging I'm Stage 1 because of my albumin level is above 3.5 and my B2M is below 3.5. My confusion comes with smoldering. I'm not showing any symptoms(that I know of) so I'm lost as to what I should actually be.
Thanks
Re: MGUS, smoldering, or active multiple myeloma?
I would suggest not getting caught up in the ISS staging criteria. In my opinion, it is a somewhat dated system and ISS staging doesn't really matter all that much when it comes to diagnosis and treatment. It also won't help you distinguish between an MGUS, smoldering multiple myeloma and symptomatic multiple myeloma diagnosis.
Given your hemoglobin, creatinine and calcium levels all look good, what remains to be seen is what your skeletal survey and bone marrow biopsy reveals. The skeletal survey will given you a preliminary indication of whether you might have any lytic lesions or not. A bone marrow biopsy will tell you your bone marrow plasma cell percentage (>10% with a clean skeletal survey would put you in the smoldering category) and cytogenetic profile (whether you have any significant, deleterious genetic mutations related to multiple myeloma) .
Lastly, the most important piece of advice I can give you is to see a multiple myeloma specialist at this point, not just a hematologist/oncologist that may occasionally deal with multiple myeloma. If you let us know what city you are in, folks on this site can make some recommendations.
Given your hemoglobin, creatinine and calcium levels all look good, what remains to be seen is what your skeletal survey and bone marrow biopsy reveals. The skeletal survey will given you a preliminary indication of whether you might have any lytic lesions or not. A bone marrow biopsy will tell you your bone marrow plasma cell percentage (>10% with a clean skeletal survey would put you in the smoldering category) and cytogenetic profile (whether you have any significant, deleterious genetic mutations related to multiple myeloma) .
Lastly, the most important piece of advice I can give you is to see a multiple myeloma specialist at this point, not just a hematologist/oncologist that may occasionally deal with multiple myeloma. If you let us know what city you are in, folks on this site can make some recommendations.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or active multiple myeloma?
Multibilly,
Sounds like great advice. Thank you. The closest myeloma specialist to me is going to be in Jacksonville, Florida. I'll call them tomorrow.
Sounds like great advice. Thank you. The closest myeloma specialist to me is going to be in Jacksonville, Florida. I'll call them tomorrow.
Re: MGUS, smoldering, or active multiple myeloma?
The Mayo in Jacksonville is very well respected in multiple myeloma circles.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or active multiple myeloma?
My doctor's appointment was rescheduled because of Hurricane Matthew. It's now scheduled for Monday, but the doctor has ordered a bone marrow biopsy and aspiration, CBC, flow cytometry and PSI (peripheral smear). The fact that he didn't order an MRI or PET scan after getting the results of the skeletal survey is encouraging to me. Thanks for the support!
Re: MGUS, smoldering, or active multiple myeloma?
I have the results from the flow cytometry conducted on my bone marrow. Here are the results:
Lymphocytes 8.8% 4.7% Mature polytypic small B cells [CD19(+), CD20(+) and a Kappa/Lambda ratio ~1:1]
71.1% Mature small T cells: [CD3(+), CD5(+), CD7(+) and CD4/CD8 ratio = 3.84:1]
13.3% NK (Natural-Killer) cells: [CD3(-), CD5(-), CD7(+), CD16(+), CD56(+)]
Monocytes 3.3% Monocytes: [CD4(+), CD11b(+), CD13(+), CD14(+), CD33(+), CD45(bright +), CD64(+)]
Granulocytes 83.0% Maturing granulocytes: [CD10(+), CD11b(+), CD13(+), CD15(+), CD16(+), CD33(+)]
CD45 Dim 0.7% Myeloblasts (not increased): [CD33(+), CD34(+), CD117(+), HLA-DR(+)]
CD45 Neg 0.5% Erythroid cells and debris: [CD45(-)]
Plasma Cells 0.14% See abnormal cells (below)
Abnormal Cells Monoclonal plasma cells (~0.2% of total): CD38(bright +), CD138(+), CD56(+), CD45(-), CD19(-), cKappa(+).
I'm assuming this is good news. Am I right?
Lymphocytes 8.8% 4.7% Mature polytypic small B cells [CD19(+), CD20(+) and a Kappa/Lambda ratio ~1:1]
71.1% Mature small T cells: [CD3(+), CD5(+), CD7(+) and CD4/CD8 ratio = 3.84:1]
13.3% NK (Natural-Killer) cells: [CD3(-), CD5(-), CD7(+), CD16(+), CD56(+)]
Monocytes 3.3% Monocytes: [CD4(+), CD11b(+), CD13(+), CD14(+), CD33(+), CD45(bright +), CD64(+)]
Granulocytes 83.0% Maturing granulocytes: [CD10(+), CD11b(+), CD13(+), CD15(+), CD16(+), CD33(+)]
CD45 Dim 0.7% Myeloblasts (not increased): [CD33(+), CD34(+), CD117(+), HLA-DR(+)]
CD45 Neg 0.5% Erythroid cells and debris: [CD45(-)]
Plasma Cells 0.14% See abnormal cells (below)
Abnormal Cells Monoclonal plasma cells (~0.2% of total): CD38(bright +), CD138(+), CD56(+), CD45(-), CD19(-), cKappa(+).
I'm assuming this is good news. Am I right?
Re: MGUS, smoldering, or active multiple myeloma?
Hi Sirfer009,
I wouldn't necessarily say that these flow cytometry results are "good" or "bad". They simply confirm that you have an immunophenotype (the overall profile of protein markers on the surface of your cells) that is consistent with a monoclonal gammopathy.
See this thread to get a better idea of what the above statement means:
https://myelomabeacon.org/forum/please-help-me-defining-the-term-cd-t2618.html#p14031
The real important things you are going to want to understand as you get the rest of your test results is your estimated bone marrow plasma cell percentage and the results of your conventional chromosome and FISH analyses (the latter two tests will tell you if you have any adverse genetic mutations to worry about).
I wouldn't necessarily say that these flow cytometry results are "good" or "bad". They simply confirm that you have an immunophenotype (the overall profile of protein markers on the surface of your cells) that is consistent with a monoclonal gammopathy.
See this thread to get a better idea of what the above statement means:
https://myelomabeacon.org/forum/please-help-me-defining-the-term-cd-t2618.html#p14031
The real important things you are going to want to understand as you get the rest of your test results is your estimated bone marrow plasma cell percentage and the results of your conventional chromosome and FISH analyses (the latter two tests will tell you if you have any adverse genetic mutations to worry about).
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS, smoldering, or active multiple myeloma?
Hi Sirf:
Please speak with your doctor, but at this stage, my understanding is that abnormal plasma cells at 0.2% of total is well within the MGUS realm. I am a little confused about the way your labs are presented. Your M-spike says 1.9, but also says not observed. If the free kappa / lambda is 7, that would also be an issue.
I am guessing that your doctor can track this with periodic blood tests (the standard is every 6 months, but I would consider every three months, just to be safe, until you get some numbers in and it shows its stable). You would be looking at the M-spike and the kappa / lambda free light chain ratio.
From my reading, very generally, you are in the range where progression is probably a long time (maybe never), however, myeloma is very tricky, and you have to play it on the safe side.
Good luck to you.
Please speak with your doctor, but at this stage, my understanding is that abnormal plasma cells at 0.2% of total is well within the MGUS realm. I am a little confused about the way your labs are presented. Your M-spike says 1.9, but also says not observed. If the free kappa / lambda is 7, that would also be an issue.
I am guessing that your doctor can track this with periodic blood tests (the standard is every 6 months, but I would consider every three months, just to be safe, until you get some numbers in and it shows its stable). You would be looking at the M-spike and the kappa / lambda free light chain ratio.
From my reading, very generally, you are in the range where progression is probably a long time (maybe never), however, myeloma is very tricky, and you have to play it on the safe side.
Good luck to you.
-
JPC - Name: JPC
23 posts
• Page 1 of 3 • 1, 2, 3