HI all,
I am new here and have some questions. I am seeing a hematologist, but he does not specialize in multiple myeloma and I am having trouble communicating with him. My question / comment is I have read that sometimes the transition from MGUS to multiple myeloma can be very rapid, and I am worried about this in my case. Is this true?
I am worried that my M-spike is going up quickly in the last 3 months. I was diagnosed with MGUS about 5 years ago, but my M-spike was minimal and was never above 2.0 g/L (0.2 g/dL). I did have Bence Jones proteins in urine once, but seemed to have disappear on other test. But my current serum Freelite test now shows the following, but no BJ proteins in urine, I have also included my SPEP results:
In January, my monoclonal band was 5 g/l (0.5 g/dL); in February was 7 g/l (0.7 g/dL), and in March 9 g/l (0.9 g/dL). My doctor told me, though, that this test was subjective as the amount was really not accurate even for the lab techs.
Any help or insight would be great!! As all of these test are so confusing. I went for bone survey today and am booked for aspiration at month end. Everything seems normal except IgG and kappa light chains.
Reticulocytes H 99 25-90 X10 9/L
Reticulocytes Immature/Total H 16.3 3.0-15.9 %
Serum Proteins
Immunoglobulins
IgG H 17.2 6.7-15.2 g/L
IgA 1.06 0.70-4.00 g/L
IgM 0.69 0.40-2.30 g/L
Protein Electrophoresis
Total Protein 76 62-82 g/L
Albumin 40.4 34.0-53.0 g/L
Alpha 1 Globulin 2.1 1.3-3.5 g/L
Alpha 2 Globulin 8.8 5.0-11.0 g/L
Beta 1 Globulin 5.4 4.0-6.6 g/L
Beta 2 Globulin 4.5 1.8-4.8 g/L
Gamma Globulin 14.7 5.1-15.0 g/L
Test Comment:
There is a monoclonal band (approx. 9 g/L) in the slow gamma region.
This band was previously identified as IgG kappa. Polyclonal immuno-
globulins do not appear suppressed.
Free Light Chains
Light Chains Kappa Free H 34.7 3.3-19.4 mg/L
Light Chains Lambda Free 17.1 5.7-26.3 mg/L
Light Chains Kappa Free /
Light Chains Lambda Free H 2.03 0.26-1.65
Thanks for any help in advance, Carol.
Forums
8 posts
• Page 1 of 1
Re: MGUS to myeloma - quick transition?
Carol,
Initially when I read this I was concerned, but I realized you quote your m-spike as g/L rather than g/dL. If you convert 5 g/L and your higher result 9 g/dL, they become 0.5 g/dL and 0.9 g/dL. Generally, there isn't much concern until the M-spike is over 1.5 g/dL or if you are otherwise symptomatic, especially your labwork.
I wonder why your physician has tested on a monthly basis though?
It's always good to seek the advice of a hematologist / oncologist who specializes in multiple myeloma, as they are most skilled at interpreting results.
Since we don't know the results of the other tests yet, it's difficult to determine if there really is a change. Do you have any other symptoms? Bone fractures?
Wishing you the best.
Initially when I read this I was concerned, but I realized you quote your m-spike as g/L rather than g/dL. If you convert 5 g/L and your higher result 9 g/dL, they become 0.5 g/dL and 0.9 g/dL. Generally, there isn't much concern until the M-spike is over 1.5 g/dL or if you are otherwise symptomatic, especially your labwork.
I wonder why your physician has tested on a monthly basis though?
It's always good to seek the advice of a hematologist / oncologist who specializes in multiple myeloma, as they are most skilled at interpreting results.
Since we don't know the results of the other tests yet, it's difficult to determine if there really is a change. Do you have any other symptoms? Bone fractures?
Wishing you the best.
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS to myeloma - quick transition?
Thanks for your reply, Toni. Understanding these tests is not easy. The monthly results actually are because I see my GP, rheumatologist, and hematologist, and each of them decided to do the electrophoresis test.
I guess knowing the difference between g/dL and g/L makes a difference in the reading of test results. I am in Canada and the tests I believe are g/L. Thank you for that, I will convert my tests results to g/dL to see the difference.
I have an ok understanding of MGUS but now with these new readings, i.e. light chains etc., I was a little worried about a transition. As I noted, I have read a few articles that say in some people the transition is very quick, and I was worried that was my case.
Thank you for your help, Toni.
I guess knowing the difference between g/dL and g/L makes a difference in the reading of test results. I am in Canada and the tests I believe are g/L. Thank you for that, I will convert my tests results to g/dL to see the difference.
I have an ok understanding of MGUS but now with these new readings, i.e. light chains etc., I was a little worried about a transition. As I noted, I have read a few articles that say in some people the transition is very quick, and I was worried that was my case.
Thank you for your help, Toni.
Re: MGUS to myeloma - quick transition?
Hi Carol,
As Toni said, your numbers are still pretty darn low. Also, some of the measurement bumps could simply be due to measurement inaccuracies (in particular, an SPEP test can overestimate the amount of monoclonal protein at low concentrations). I'm not a doc, but I would simply wait and see how a few more tests go before starting to worry about whether you might be progressing.
As Toni said, your numbers are still pretty darn low. Also, some of the measurement bumps could simply be due to measurement inaccuracies (in particular, an SPEP test can overestimate the amount of monoclonal protein at low concentrations). I'm not a doc, but I would simply wait and see how a few more tests go before starting to worry about whether you might be progressing.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS to myeloma - quick transition?
Other then the irregular blood work, do you have any symptoms?
I am in Canada too. The numbers rising are not enough to be progression. I believe your spike would need to be over 30 to be diagnosed as myeloma. Have you had other blood work for kidney function and blood counts? Have they done a bone survey (full body xrays)?
I am in Canada too. The numbers rising are not enough to be progression. I believe your spike would need to be over 30 to be diagnosed as myeloma. Have you had other blood work for kidney function and blood counts? Have they done a bone survey (full body xrays)?
-
Anonymous
Re: MGUS to myeloma - quick transition?
Thank you for your reply, Anonymous. I have had a skeletal survey done and I will review the results with my doctor on the 30th. He will also confirm to proceed with the aspiration then. After reading about people with left over issues and pain, I am inclined to put off the aspiration until my numbers are higher.
Thank you for replying.
Thank you for replying.
Re: MGUS to myeloma - quick transition?
I have had my bone marrow biopsy done today. Make sure you ask for sedation, don't let them do this without sedation.
I'm newly diagnosed with MGUS. My gamma light chains, if I understand correctly, are 45%, or is that my immunoglobulin? Heck, I've only known about MGUS for 30 days. As to symptoms, just burning legs and achey joints. As to my skeletal survey, well, it's been over a week, and nobody has called yet, so I guess it's fair too say no news is good news.
I was told by doctor that the transition in most cases is slow, and doctors are relying more so on the numbers for treatment before it becomes multiple myeloma.
I'm newly diagnosed with MGUS. My gamma light chains, if I understand correctly, are 45%, or is that my immunoglobulin? Heck, I've only known about MGUS for 30 days. As to symptoms, just burning legs and achey joints. As to my skeletal survey, well, it's been over a week, and nobody has called yet, so I guess it's fair too say no news is good news.
I was told by doctor that the transition in most cases is slow, and doctors are relying more so on the numbers for treatment before it becomes multiple myeloma.
Re: MGUS to myeloma - quick transition?
HI jlccrum,
Thank you for your post. I was diagnosed with MGUS about six or 7 years ago at about 35.
I haven't really felt anything until recently when I have been very tired, achy shoulder and shins, and tingling in my hands and feet. So I went to the doctor to redo my tests and I was worried as every time a doctor did my electrophoresis, the M-spike was higher.
I see my hematologist tomorrow so I will give you an update. Last time I saw him he said the bone marrow aspiration was not really needed at this stage unless I wanted it for my own peace of mind.
I read that some people have painful side effect, i.e. the needle hits a nerve, that can last for a long time. Since I am a big chicken, I think I might defer. Hopefully nothing else keeps increasing in my bloodwork.
I hope you feel better soon. Thanks for the post and info.
Carol.
Thank you for your post. I was diagnosed with MGUS about six or 7 years ago at about 35.
I haven't really felt anything until recently when I have been very tired, achy shoulder and shins, and tingling in my hands and feet. So I went to the doctor to redo my tests and I was worried as every time a doctor did my electrophoresis, the M-spike was higher.
I see my hematologist tomorrow so I will give you an update. Last time I saw him he said the bone marrow aspiration was not really needed at this stage unless I wanted it for my own peace of mind.
I read that some people have painful side effect, i.e. the needle hits a nerve, that can last for a long time. Since I am a big chicken, I think I might defer. Hopefully nothing else keeps increasing in my bloodwork.
I hope you feel better soon. Thanks for the post and info.
Carol.
8 posts
• Page 1 of 1