My name is Jeannette, 45. Mom / wife. After an appointment with doctor wanting to rule out a previous diagnosis of fibromyalgia, my doctor ordered blood work. M-spike was 1.4 g/dL (14 g/L), so we retested a month later. The latest test showed an M-spike of 1.5 g/dL.
I've done beginning research. CRAB: calcium normal, renal low end of normal, no anemia. Have an appointment with the hematologist next week.
My concern is that, even though my M-spike level was low, it increased in a month. Does this indicate anything?
Is there a level that differentiates between MGUS, smoldering, and symptomatic myeloma?
Thank you in advance for any input.
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8 posts
• Page 1 of 1
Re: Not sure if MGUS, smoldering, or symptomatic
Jeanette,
Sorry to see you join the club.
You can't stage multiple myeloma based on just your M-spike. Also note that a change in the M-Spike from 1.4 g/dL to 1.5 g/dL is trivial and could simply be due to lab error and/or the time of day you did the test. For all intents and purposes, your M-Spike didn't change.
Have you had a bone marrow biopsy to determine your bone marrow plasma % and a full body xray or MRI to see if you have any lytic lesions (i.e the "B" in CRAB)? Without these additional tests, you can't differentiate between MGUS, SMM and symptomatic multiple myeloma.
You should read the entire handbook below, but see Table 1 on page 5 of the following to get a better idea of how the staging works:
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Also, if you aren't already working with a doc that specializes in multiple myeloma, you really should seek one out. If you let us know where you live, we can likely recommend an institute or specific doc in your area.
Best of luck to you and let us know how we can help.
Sorry to see you join the club.
You can't stage multiple myeloma based on just your M-spike. Also note that a change in the M-Spike from 1.4 g/dL to 1.5 g/dL is trivial and could simply be due to lab error and/or the time of day you did the test. For all intents and purposes, your M-Spike didn't change.
Have you had a bone marrow biopsy to determine your bone marrow plasma % and a full body xray or MRI to see if you have any lytic lesions (i.e the "B" in CRAB)? Without these additional tests, you can't differentiate between MGUS, SMM and symptomatic multiple myeloma.
You should read the entire handbook below, but see Table 1 on page 5 of the following to get a better idea of how the staging works:
http://myeloma.org/pdfs/Patient_Handbook_2013.pdf
Also, if you aren't already working with a doc that specializes in multiple myeloma, you really should seek one out. If you let us know where you live, we can likely recommend an institute or specific doc in your area.
Best of luck to you and let us know how we can help.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure if MGUS, smoldering, or symptomatic
Thank you! I will do my homework 
No B for CRAB. First appointment with hematologist is next week. I'm assuming they'll do their own blood work to confirm M-spike and the other less invasive tests to determine whether I need the full body MRI -- possibly a bone marrow biopsy?
Your info helped calm my nerves (1.4 to 1.5 being minimal / time of day etc). It made the wait for my appointment MUCH easier!
Closest cities are Manhattan, Topeka, Kansas City (Kansas).
No B for CRAB. First appointment with hematologist is next week. I'm assuming they'll do their own blood work to confirm M-spike and the other less invasive tests to determine whether I need the full body MRI -- possibly a bone marrow biopsy?
Your info helped calm my nerves (1.4 to 1.5 being minimal / time of day etc). It made the wait for my appointment MUCH easier!
Closest cities are Manhattan, Topeka, Kansas City (Kansas).
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Jeannette - Name: Jeannette
- Who do you know with myeloma?: Possible MGUS
- Age at diagnosis: 45
Re: Not sure if MGUS, smoldering, or symptomatic
Glad I was able to make you feel a tad calmer about all this.
I meant to say whole body PET/CT or xray (places that do full body MRIs are hard to come by). To be clear, you can't say you don't have the "B" in CRAB if you don't first have one of these tests.
For institutions, please see:
https://myelomabeacon.org/resources/treatment-centers/
Others on the forum in the KS area might share their own recommendations.
I meant to say whole body PET/CT or xray (places that do full body MRIs are hard to come by). To be clear, you can't say you don't have the "B" in CRAB if you don't first have one of these tests.
For institutions, please see:
https://myelomabeacon.org/resources/treatment-centers/
Others on the forum in the KS area might share their own recommendations.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure if MGUS, smoldering, or symptomatic
Hi Jeannette,
I'm not aware of any physician in Kansas who focuses primarily on the diagnosis and treatment of myeloma. That doesn't mean there aren't any. I just don't know of any off the top of my head.
I'm rather certain, however, that the University of Kansas Cancer Center has several hematologist-oncologists who, together, regularly see a number of myeloma patients. So, in terms of places reasonably close to you, that probably is a good place to go first.
Another alternative is to have the necessary imaging and bone marrow biopsy done someplace very near where you live, and then have the results sent to a myeloma specialist for a second opinion -- particularly if the results seem a bit unclear.
I'll let others here share their thoughts on that idea. Also, if others are aware of physicians in Kansas who really focus on myeloma, that would be good to know as well.
I'm not aware of any physician in Kansas who focuses primarily on the diagnosis and treatment of myeloma. That doesn't mean there aren't any. I just don't know of any off the top of my head.
I'm rather certain, however, that the University of Kansas Cancer Center has several hematologist-oncologists who, together, regularly see a number of myeloma patients. So, in terms of places reasonably close to you, that probably is a good place to go first.
Another alternative is to have the necessary imaging and bone marrow biopsy done someplace very near where you live, and then have the results sent to a myeloma specialist for a second opinion -- particularly if the results seem a bit unclear.
I'll let others here share their thoughts on that idea. Also, if others are aware of physicians in Kansas who really focus on myeloma, that would be good to know as well.
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Not sure if MGUS, smoldering, or symptomatic
When for the very first time your doctor sees the m-spike, assuming it is not an oncologist or multiple myeloma specialist, he should send you to the specialist at once. Some form of myeloma or risk of developing it is present. It is out of the GP's hands.
Staging is not possible from the present information. The m-component only tell that the cancer is there. Not that it is active, although it could be.
Please do not take my word, insist on a multiple myeloma specialist from the first moment. But the m-component of 1.5 does not as a stand-alone result put you in the full multiple myeloma category. At least not before you have a bone marrow biopsy, and other tests and scans. http://myeloma.org/pdfs/flowchart_ENG_monitoring_n1.pdf
General information and answers, and other people's experiences from here, made a real difference for me. The Myeloma Beacon is extremely valuable!
But when someone in here, who is not a physician / myeloma specialist, answers, it will be based on our own experience and hence valuable within its own context. And should be used as such. Some of the most important advice you will get will be those based on other peoples experiences.
When you know if you have active multiple myeloma or a early / smoldering condition, you will find this site to be one of your best sources for discussing your results and for reading about other people's experiences.
Staging is not possible from the present information. The m-component only tell that the cancer is there. Not that it is active, although it could be.
Please do not take my word, insist on a multiple myeloma specialist from the first moment. But the m-component of 1.5 does not as a stand-alone result put you in the full multiple myeloma category. At least not before you have a bone marrow biopsy, and other tests and scans. http://myeloma.org/pdfs/flowchart_ENG_monitoring_n1.pdf
General information and answers, and other people's experiences from here, made a real difference for me. The Myeloma Beacon is extremely valuable!
But when someone in here, who is not a physician / myeloma specialist, answers, it will be based on our own experience and hence valuable within its own context. And should be used as such. Some of the most important advice you will get will be those based on other peoples experiences.
When you know if you have active multiple myeloma or a early / smoldering condition, you will find this site to be one of your best sources for discussing your results and for reading about other people's experiences.
-
Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Not sure if MGUS, smoldering, or symptomatic
Jeanette,
Welcome to the Myeloma Beacon. You will find so much great information and very supportive participants with supportive forums.
Last April I was diagnosed as MGUS. Yes, it's very scary when they say "monoclonal gammopathy" and the first thing that comes up is multiple myeloma! And it's even scarier when you call the doctor's office and the nurse says she has no idea what it is ...
That said, it was my neurologist who found the M-spike, originally 1.1 g/dL (11 g/L), IgG kappa. The next test result was 0.9, then some time after that was 1.0. All of those tests were done in a 3 month time period. Interestingly, I went to a myeloma specialist and had my fourth test done 2 weeks after the last one, and it came back as 0.76! Different labs but also the m-spike varies you will find. What they say is to look for trends, significant ones.
Boris or Multibilly can help me out on this one, but I think when it comes to m-spike, they look at an increase of 50% over two different tests (I think over a period of 3 months?). So the change would have to be pretty significant. So, for example, if you had a m-spike of 1.0, then if it went up to 1.5, this might be cause for concern.
You've been given some excellent advice here. They'll want to run a bunch of blood tests, check your urine and then the biggest thing they should do is a dexa (bone density) scan to determine if you have any osteopenia / osteoporosis and a complete set of body xrays to check for lesions. Honestly, just getting these tests done for me was a huge relief. I have osteopenia (I'm 51 and premenopausal), but they found no lesions or "lucency" of the bone.
My original oncologist would only do a bone marrow biopsy if the m-spike was over a certain number, which mine was not. Since we live within an hour's drive of an excellent cancer center with a notable myeloma specialist, I decided to change physicians / clinics.
While they originally did not think it necessary to do a bone marrow biopsy, when I told them I'd had frequent sinus infections, ear infections, pneumonia and I'm on antibiotics 3-4 times a year, they opted to do the BMB, which confirmed MGUS (5-10% plasma cells in the marrow).
So, I'd encourage you to pursue all the testing available to you, including the BMB. In fact, I was encouraged here to have it done, as there really is no way to absolutely confirm MGUS without it.
Were they able to tell you what type of paraprotein you have? IgG, IgA, IgM? This too helps to identify the potential rate of progression to SMM (smoldering myeloma or asymptomatic myeloma).
Keep us posted. And any questions or concerns at all, please be sure to ask.
Welcome to the Myeloma Beacon. You will find so much great information and very supportive participants with supportive forums.
Last April I was diagnosed as MGUS. Yes, it's very scary when they say "monoclonal gammopathy" and the first thing that comes up is multiple myeloma! And it's even scarier when you call the doctor's office and the nurse says she has no idea what it is ...
That said, it was my neurologist who found the M-spike, originally 1.1 g/dL (11 g/L), IgG kappa. The next test result was 0.9, then some time after that was 1.0. All of those tests were done in a 3 month time period. Interestingly, I went to a myeloma specialist and had my fourth test done 2 weeks after the last one, and it came back as 0.76! Different labs but also the m-spike varies you will find. What they say is to look for trends, significant ones.
Boris or Multibilly can help me out on this one, but I think when it comes to m-spike, they look at an increase of 50% over two different tests (I think over a period of 3 months?). So the change would have to be pretty significant. So, for example, if you had a m-spike of 1.0, then if it went up to 1.5, this might be cause for concern.
You've been given some excellent advice here. They'll want to run a bunch of blood tests, check your urine and then the biggest thing they should do is a dexa (bone density) scan to determine if you have any osteopenia / osteoporosis and a complete set of body xrays to check for lesions. Honestly, just getting these tests done for me was a huge relief. I have osteopenia (I'm 51 and premenopausal), but they found no lesions or "lucency" of the bone.
My original oncologist would only do a bone marrow biopsy if the m-spike was over a certain number, which mine was not. Since we live within an hour's drive of an excellent cancer center with a notable myeloma specialist, I decided to change physicians / clinics.
While they originally did not think it necessary to do a bone marrow biopsy, when I told them I'd had frequent sinus infections, ear infections, pneumonia and I'm on antibiotics 3-4 times a year, they opted to do the BMB, which confirmed MGUS (5-10% plasma cells in the marrow).
So, I'd encourage you to pursue all the testing available to you, including the BMB. In fact, I was encouraged here to have it done, as there really is no way to absolutely confirm MGUS without it.
Were they able to tell you what type of paraprotein you have? IgG, IgA, IgM? This too helps to identify the potential rate of progression to SMM (smoldering myeloma or asymptomatic myeloma).
Keep us posted. And any questions or concerns at all, please be sure to ask.
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Not sure if MGUS, smoldering, or symptomatic
Thank you for all the replies . I don't have specifics but will after my appointment Thursday. I'll be sure to share when I have more.
Sincerely,
Jeannette
. I don't have specifics but will after my appointment Thursday. I'll be sure to share when I have more. Sincerely,
Jeannette
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Jeannette - Name: Jeannette
- Who do you know with myeloma?: Possible MGUS
- Age at diagnosis: 45
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