History of MGUS. I have elevated immunoglobulin kappa free light at 2.17, which has risen, IgG 1710, beta 2 microglobulin 2.98. Skeletal films now show 2 lytic lesions skull, 5 mm and 6 mm, with spine showing osteoporosis manifestation diffuse multiple myeloma.
Concern? Is this enough information?
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Re: Is my MGUS now multiple myeloma?
Hi Emmylou
Do not try to diagnose yourself like this as you will worry more, without actually knowing what is happening to you.
Please go and seek a myeloma specialist, if you have not already done this, who can review your results and medical history. If myeloma is suspected there will no doubt be more tests to confirm a diagnosis.
Best wishes
Edna
Do not try to diagnose yourself like this as you will worry more, without actually knowing what is happening to you.
Please go and seek a myeloma specialist, if you have not already done this, who can review your results and medical history. If myeloma is suspected there will no doubt be more tests to confirm a diagnosis.
Best wishes
Edna
Re: Is my MGUS now multiple myeloma?
Hi Emmylou,
I would echo what Edna has said; see a myeloma specialist if you are not already seeing one.
I would echo what Edna has said; see a myeloma specialist if you are not already seeing one.
-
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: Is my MGUS now multiple myeloma?
Hi Emmylou,
Please go see a myeloma specialist to ensure that you are getting the right testing and right treatments. It would be best to avoid any further bone erosion but any treatment should be prescribed by a qualified myeloma specialist. I have the same questions as you in regards to my husband, who has a similar profile as yours.
My husband, 54, was recently diagnosed with MGUS and has about the same findings as you. He has IgG kappa - 1751 mg/dl (694-1618) (abnormal). He also has 2 lucent areas on his skull (possible normal venous lakes) and a mild wedge (fracture) in his vertebrae (found in a full body x-ray). As a result of the x-ray findings, the hematologist did a bone marrow aspiration yesterday which will give him an indication of the next step. We will also be pursuing Dr. Berenson in West Hollywood as our myeloma specialist for a second opinion.
Here is an article on bone loss:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
Your IgG numbers seem to be low abnormal (like my husband's) but if there are bone issues, it may be best to consult a myeloma specialist and see if there is anything you can do to strengthen your bones and what other tests need to be run to ensure that you are still MGUS.
Brandyjoco (wife)
Please go see a myeloma specialist to ensure that you are getting the right testing and right treatments. It would be best to avoid any further bone erosion but any treatment should be prescribed by a qualified myeloma specialist. I have the same questions as you in regards to my husband, who has a similar profile as yours.
My husband, 54, was recently diagnosed with MGUS and has about the same findings as you. He has IgG kappa - 1751 mg/dl (694-1618) (abnormal). He also has 2 lucent areas on his skull (possible normal venous lakes) and a mild wedge (fracture) in his vertebrae (found in a full body x-ray). As a result of the x-ray findings, the hematologist did a bone marrow aspiration yesterday which will give him an indication of the next step. We will also be pursuing Dr. Berenson in West Hollywood as our myeloma specialist for a second opinion.
Here is an article on bone loss:
"Experts Publish Treatment Recommendations For Multiple Myeloma-Related Bone Disease," The Myeloma Beacon, June 26, 2013
Your IgG numbers seem to be low abnormal (like my husband's) but if there are bone issues, it may be best to consult a myeloma specialist and see if there is anything you can do to strengthen your bones and what other tests need to be run to ensure that you are still MGUS.
Brandyjoco (wife)
-
brandyjoco - Name: brandyjoco
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 54
Re: Is my MGUS now multiple myeloma?
Hi Emmylou,
I'm sorry to hear about the concerns that you have.
While you are waiting on feedback from your doctors on your lab results, perhaps some of us here can help you understand them better. We cannot substitute, of course, for the opinion of your doctors, and it is certainly true that seeing a myeloma specialist is very valuable in a situation such as yours. But I realize that the reason you are here in the first place is to learn more about your situation, which I think is a good thing -- not just for now, but for the long term.
First of all, you may want to read this article,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
which explains the latest criteria for diagnosing multiple myeloma, and for distinguishing between multiple myeloma, smoldering myeloma, MGUS, and solitary plasmacytomas. As you probably know, these are all similar diseases. However, some of them are viewed as requiring treatment, while doctors typically recommend a watch-and-wait approach for others.
As you'll see in the article, the key things a doctor is likely to look at to decide if you have multiple myeloma are your
So lab results related to the variables I've just listed are what are most important at this point.
Of course, your doctors also will look (a lot) at the trends in your lab results, because they won't want to make a final decision about your situation before making sure your results clearly indicate multiple myeloma.
Finally, you should know that lesions in the skull often can be misinterpreted as being lytic lesions when in fact they are a more benign formation known as "venous lakes". So your doctors will be looking more closely at whether or not the imaging of your skull really indicates that there are lytic lesions.
I hope this helps you a bit. If you have more questions, or would like feedback on some of your lab results, just let us know.
Good luck!
I'm sorry to hear about the concerns that you have.
While you are waiting on feedback from your doctors on your lab results, perhaps some of us here can help you understand them better. We cannot substitute, of course, for the opinion of your doctors, and it is certainly true that seeing a myeloma specialist is very valuable in a situation such as yours. But I realize that the reason you are here in the first place is to learn more about your situation, which I think is a good thing -- not just for now, but for the long term.
First of all, you may want to read this article,
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
which explains the latest criteria for diagnosing multiple myeloma, and for distinguishing between multiple myeloma, smoldering myeloma, MGUS, and solitary plasmacytomas. As you probably know, these are all similar diseases. However, some of them are viewed as requiring treatment, while doctors typically recommend a watch-and-wait approach for others.
As you'll see in the article, the key things a doctor is likely to look at to decide if you have multiple myeloma are your
- M-spike (if you have one)
- Free light chain levels and your involved/uninvolved free light chain ratio
- Bone marrow plasma cell percentage
- Hemoglobin level
- Creatinine level
- Calcium level
So lab results related to the variables I've just listed are what are most important at this point.
Of course, your doctors also will look (a lot) at the trends in your lab results, because they won't want to make a final decision about your situation before making sure your results clearly indicate multiple myeloma.
Finally, you should know that lesions in the skull often can be misinterpreted as being lytic lesions when in fact they are a more benign formation known as "venous lakes". So your doctors will be looking more closely at whether or not the imaging of your skull really indicates that there are lytic lesions.
I hope this helps you a bit. If you have more questions, or would like feedback on some of your lab results, just let us know.
Good luck!
Re: Is my MGUS now multiple myeloma?
Thanks for the information. My myeloma specialist will not be able to review my films until next week but then will be contacting me. I'm just anxious. My skeletal films have changed over the last few years and my lab trends are rising.
Re: Is my MGUS now multiple myeloma?
Keep us (if that is what you want) in the loop as to what the multiple myeloma specialist says.
-
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
7 posts
• Page 1 of 1