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Difference - MGUS, smoldering, and multiple myeloma?
I am not knowledgeable with the differences between MGUS, smoldering multiple myeloma, and multiple meyloma. Any insight?
Re: Difference - MGUS, smoldering, and multiple myeloma?
Hi ShopChic,
MGUS, smoldering multiple myeloma, and multiple myeloma are related diseases. In all three diseases, some of the plasma cells in the body, which are normally found primarily in the bone marrow, have mutated.
These "monoclonal" plasma cells reproduce more than the normal plasma cells in the body. As a result, in most people with one of the diseases, you will find higher levels of the proteins (immunoglobulins and light chains) normally produced by all plasma cells. The higher levels of these proteins are due to the monoclonal plasma cells producing unhealthy, monoclonal immunoglobulin and light chains.
This is why for all three diseases the key tests for the presence of the disease involves testing for the presence of monoclonal proteins and checking the levels of light chains. (The light chain levels are best tested using what is known as the serum free light chain test.)
MGUS can be thought of a VERY early stage of multiple myeloma, but it is also different from smoldering multiple myeloma and multiple myeloma in that, in most cases, it stays benign (that is, it never progresses to one of the other two diseases). In MGUS patients, there are only very low levels of monoclonal plasma cells in the bone marrow, and low levels of monoclonal immunoglobulins and light chains. Only 1 or 2% of MGUS patients progress to having multiple myeloma, or a related disease, in a given year.
Currently, MGUS is rarely, if ever, treated, because the disease is viewed as causing little or no damage to other parts of the body, and a limited number of people with the disease progress to a stage where treatment is definitely required.
Smoldering multiple myeloma is sort of between MGUS and multiple myeloma. People with smoldering multiple myeloma have more monoclonal plasma cells, and higher levels of monoclonal proteins and/or light chains, in their bodies than people with MGUS. However, the disease is still not considered advanced enough to warrant being treated.
A good proportion of people with smoldering myeloma will progress, however, to having multiple myeloma. The probability is something like 75 percent within 20 years of being diagnosed with smoldering myeloma, and, unfortunately, a majority of smoldering myeloma patients will progress to having multiple myeloma within 5 or 10 years of diagnosis.
The last of the three diseases is multiple myeloma. In this form, the disease has advanced enough that it is either doing damage to the body, or is very likely to do so in the immediate future. The percent of bone marrow cells that are monoclonal plasma cells is high, and there are high levels of either monoclonal protein or light chains, or both, in the blood. People with multiple myeloma usually are suffering from bone damage, anemia, or kidney damage, or some combination of all three, when they are diagnosed. Thus, the disease really has to be treated, generally as soon as possible.
The criteria for diagnosing the three diseases recently changed, and this article has a summary of the latest criteria:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
The Wikipedia article on multiple myeloma also gives a useful, but somewhat outdated, summary of the diagnostic criteria; here is a link to the relevant section of that article:
https://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Best of luck to you,
Cheryl
MGUS, smoldering multiple myeloma, and multiple myeloma are related diseases. In all three diseases, some of the plasma cells in the body, which are normally found primarily in the bone marrow, have mutated.
These "monoclonal" plasma cells reproduce more than the normal plasma cells in the body. As a result, in most people with one of the diseases, you will find higher levels of the proteins (immunoglobulins and light chains) normally produced by all plasma cells. The higher levels of these proteins are due to the monoclonal plasma cells producing unhealthy, monoclonal immunoglobulin and light chains.
This is why for all three diseases the key tests for the presence of the disease involves testing for the presence of monoclonal proteins and checking the levels of light chains. (The light chain levels are best tested using what is known as the serum free light chain test.)
MGUS can be thought of a VERY early stage of multiple myeloma, but it is also different from smoldering multiple myeloma and multiple myeloma in that, in most cases, it stays benign (that is, it never progresses to one of the other two diseases). In MGUS patients, there are only very low levels of monoclonal plasma cells in the bone marrow, and low levels of monoclonal immunoglobulins and light chains. Only 1 or 2% of MGUS patients progress to having multiple myeloma, or a related disease, in a given year.
Currently, MGUS is rarely, if ever, treated, because the disease is viewed as causing little or no damage to other parts of the body, and a limited number of people with the disease progress to a stage where treatment is definitely required.
Smoldering multiple myeloma is sort of between MGUS and multiple myeloma. People with smoldering multiple myeloma have more monoclonal plasma cells, and higher levels of monoclonal proteins and/or light chains, in their bodies than people with MGUS. However, the disease is still not considered advanced enough to warrant being treated.
A good proportion of people with smoldering myeloma will progress, however, to having multiple myeloma. The probability is something like 75 percent within 20 years of being diagnosed with smoldering myeloma, and, unfortunately, a majority of smoldering myeloma patients will progress to having multiple myeloma within 5 or 10 years of diagnosis.
The last of the three diseases is multiple myeloma. In this form, the disease has advanced enough that it is either doing damage to the body, or is very likely to do so in the immediate future. The percent of bone marrow cells that are monoclonal plasma cells is high, and there are high levels of either monoclonal protein or light chains, or both, in the blood. People with multiple myeloma usually are suffering from bone damage, anemia, or kidney damage, or some combination of all three, when they are diagnosed. Thus, the disease really has to be treated, generally as soon as possible.
The criteria for diagnosing the three diseases recently changed, and this article has a summary of the latest criteria:
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
The Wikipedia article on multiple myeloma also gives a useful, but somewhat outdated, summary of the diagnostic criteria; here is a link to the relevant section of that article:
https://en.wikipedia.org/wiki/Multiple_myeloma#Diagnostic_criteria
Best of luck to you,
Cheryl
Re: Difference - MGUS, smoldering, and multiple myeloma?
For almost 3 years now since my transplant, my doctors have been referring to my status as reverted to MGUS or behaving like MGUS. At last months bone marrow biopsy (BMB), my specialist found some bad cells – 15% approximately – and there was fear of myeloma returning. At further look I was told they were MGUS cells and they were just sitting there, not splitting or causing problems.
I guess my question is, if I have "reverted to MGUS," in the long term will the disease behave like MGUS? Could I get a long period of ... not remission, but stable disease, I guess?
After the transplant all my imaging tests came out completely negative, but on the BMB I had some bad cells. Because they appeared to act like MGUS, there was no attempt to push me into complete remission. They said there was no need. I was told if I walked in the door tomorrow with these tests and no organ damage, no bone damage since my initial plasmacytoma, I would not have cancer, I would be diagnosed with MGUS. 2 years later my current specialist says as of last week, he thinks that nothing has changed and we do the same – continue 10 mg Revlimid as maintenance, now for 28 straight months.
I have some weird stuff here, I am nonsecretory and always have been, and now I have reverted to MGUS. What the heck does all this mean for the future?
I guess my question is, if I have "reverted to MGUS," in the long term will the disease behave like MGUS? Could I get a long period of ... not remission, but stable disease, I guess?
After the transplant all my imaging tests came out completely negative, but on the BMB I had some bad cells. Because they appeared to act like MGUS, there was no attempt to push me into complete remission. They said there was no need. I was told if I walked in the door tomorrow with these tests and no organ damage, no bone damage since my initial plasmacytoma, I would not have cancer, I would be diagnosed with MGUS. 2 years later my current specialist says as of last week, he thinks that nothing has changed and we do the same – continue 10 mg Revlimid as maintenance, now for 28 straight months.
I have some weird stuff here, I am nonsecretory and always have been, and now I have reverted to MGUS. What the heck does all this mean for the future?
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Bluemountain
Re: Difference - MGUS, smoldering, and multiple myeloma?
Hi Bluemountain,
I think it probably would be best if your doctor explained to you what she or he means, exactly, by her/his description of what your multiple myeloma is like right now. Your doctor really knows better than anyone here how stable your disease is based, for example, on all your lab results and bone marrow biopsies.
What I will say now, though, is that I personally feel doctors should be REALLY hesitant to use descriptions like "your myeloma is basically like smoldering myeloma now" or "your myeloma is in an MGUS-like state right now."
I know the doctors mean well. I think most of the time they're trying to explain to someone that, even though they haven't gotten a complete response to treatment, their disease is not doing their body any harm, and it may even be stable for a long time.
The doctors also believe they are being correct in what they are saying because they are saying "smoldering-LIKE" or "MGUS-LIKE".
The problem is that, particularly when doctors make the comparison to MGUS, many patients then think that all the things they have read about MGUS apply to them. That includes the fact that people with MGUS have only a 1-2% chance each year of progressing to multiple myeloma.
Unfortunately, that's just not true in most cases. Most of the time, myeloma that is in remission in an "MGUS-like" state is only "MGUS-like" in terms of lab test results like M-spikes and bone marrow plasma cell percentages. It's not "MGUS-like" in terms of the probability of progressing (back) to multiple myeloma.
I'm sorry if this seems nitpicky to some people, and I'll end this rant in a minute. All I can say is that I'm sensitive about this because, after reading postings in this forum for a few years now, I've seen too many cases of people writing "I was treated and my myeloma is now smoldering" or "I was treated and I'm now MGUS." I have worried in most of these cases that, one way or another, the people making those statements had been led to believe that their disease was more benign than it really was.
Take care everyone,
Cheryl
I think it probably would be best if your doctor explained to you what she or he means, exactly, by her/his description of what your multiple myeloma is like right now. Your doctor really knows better than anyone here how stable your disease is based, for example, on all your lab results and bone marrow biopsies.
What I will say now, though, is that I personally feel doctors should be REALLY hesitant to use descriptions like "your myeloma is basically like smoldering myeloma now" or "your myeloma is in an MGUS-like state right now."
I know the doctors mean well. I think most of the time they're trying to explain to someone that, even though they haven't gotten a complete response to treatment, their disease is not doing their body any harm, and it may even be stable for a long time.
The doctors also believe they are being correct in what they are saying because they are saying "smoldering-LIKE" or "MGUS-LIKE".
The problem is that, particularly when doctors make the comparison to MGUS, many patients then think that all the things they have read about MGUS apply to them. That includes the fact that people with MGUS have only a 1-2% chance each year of progressing to multiple myeloma.
Unfortunately, that's just not true in most cases. Most of the time, myeloma that is in remission in an "MGUS-like" state is only "MGUS-like" in terms of lab test results like M-spikes and bone marrow plasma cell percentages. It's not "MGUS-like" in terms of the probability of progressing (back) to multiple myeloma.
I'm sorry if this seems nitpicky to some people, and I'll end this rant in a minute. All I can say is that I'm sensitive about this because, after reading postings in this forum for a few years now, I've seen too many cases of people writing "I was treated and my myeloma is now smoldering" or "I was treated and I'm now MGUS." I have worried in most of these cases that, one way or another, the people making those statements had been led to believe that their disease was more benign than it really was.
Take care everyone,
Cheryl
Re: Difference - MGUS, smoldering, and multiple myeloma?
Wow ... that kinda sounded like an opinion. The results I have are from 2 of the 50 specialist referred to frequently at this site. Both used the term "reverted to MGUS" and neither said it was gonna be like if it was if it were on initial diagnosis, but one did say it was the best possible scenario.
At my first couple of follow ups from BMB, all imaging tests were clear and I have never had organ or bone involvement beyond one singular plasmacytoma and one lesion that has been dormant and unchanged for 3 years. After the imaging my specialist assumed that I would be at 0% myeloma cells and turned out there was still 5% involvement. The decision was made immediately to do nothing beyond minimal maintenance, no further chemo, no dex with the 10 mg Revlimid, no consolidation, no second transplant. All of these were put on the back burner because all involved agreed there was no need. All are in the future tool box but so far I have had induction, BMB, and maintenance and nothing more and 3 years from BMB, and everything number wise is the same as post BMB. Even described as the best case scenario and was told it could go on for years.
I think I'll go with the specialist. I completely realize this is not the same as initially having MGUS and that evolution but if I can hold onto this for a couple more years then I have every single tool in the toolbox still at my disposal. I'm still only 56, in very good shape, and eligible for anything ... another transplant, all or the new immunotherapies that will be out, and all of the things in the pipeline.
Don't know why you felt the need for the negative ... deal with it, you're dying lecture. We are all grown ups, allow a little hope. There are a lot of good people doing a lot of good things to make our future better, including my amazing doctors!
At my first couple of follow ups from BMB, all imaging tests were clear and I have never had organ or bone involvement beyond one singular plasmacytoma and one lesion that has been dormant and unchanged for 3 years. After the imaging my specialist assumed that I would be at 0% myeloma cells and turned out there was still 5% involvement. The decision was made immediately to do nothing beyond minimal maintenance, no further chemo, no dex with the 10 mg Revlimid, no consolidation, no second transplant. All of these were put on the back burner because all involved agreed there was no need. All are in the future tool box but so far I have had induction, BMB, and maintenance and nothing more and 3 years from BMB, and everything number wise is the same as post BMB. Even described as the best case scenario and was told it could go on for years.
I think I'll go with the specialist. I completely realize this is not the same as initially having MGUS and that evolution but if I can hold onto this for a couple more years then I have every single tool in the toolbox still at my disposal. I'm still only 56, in very good shape, and eligible for anything ... another transplant, all or the new immunotherapies that will be out, and all of the things in the pipeline.
Don't know why you felt the need for the negative ... deal with it, you're dying lecture. We are all grown ups, allow a little hope. There are a lot of good people doing a lot of good things to make our future better, including my amazing doctors!
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Bluemountain
Re: Difference - MGUS, smoldering, and multiple myeloma?
This is the science behind the statement. Please be careful when playing doctor, there are people on here who take casual observer remarks as fact.
"Researchers Develop Model To Identify Myeloma Patients With MGUS-Like Disease," The Myeloma Beacon, July 8, 2013
"Researchers Develop Model To Identify Myeloma Patients With MGUS-Like Disease," The Myeloma Beacon, July 8, 2013
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Bluemountain
Re: Difference - MGUS, smoldering, and multiple myeloma?
Bluemountain,
I'm well aware of that study. I explicitly had it in mind when I was writing my response. It's why I wrote "that's just not true IN MOST CASES" (emphasis added), rather than "that's just not true".
Also, I wrote my response in anything but a casual manner. You'll notice that I specifically said that, in your case, your doctor is really the best person to explain to you what she or he means and is implying when describing your disease as MGUS-like.
The reason I wrote the rest of my posting was very much prompted, however, by your original question, where you wrote:
"if I have "reverted to MGUS," in the long term will the disease behave like MGUS?"
This suggested to me that you, like others I have seen here in the forum, might not fully appreciate exactly what doctors mean when they say that a patient's multiple myeloma is now "MGUS-like" or "smoldering-like". And because I've seen confusion on that issue many times before, I felt it would be helpful for many people to have the issue clarified.
I don't have anything against hope. If you go back and read other postings I've made, you'll see that I regularly offer encouragement and support to people here in the forum. I also try to help people better understand their disease, because I am convinced that a better educated myeloma patient is a myeloma patient who will live a longer, better life.
It was in that spirit that I formulated my previous postings in this thread.
Best wishes,
Cheryl
I'm well aware of that study. I explicitly had it in mind when I was writing my response. It's why I wrote "that's just not true IN MOST CASES" (emphasis added), rather than "that's just not true".
Also, I wrote my response in anything but a casual manner. You'll notice that I specifically said that, in your case, your doctor is really the best person to explain to you what she or he means and is implying when describing your disease as MGUS-like.
The reason I wrote the rest of my posting was very much prompted, however, by your original question, where you wrote:
"if I have "reverted to MGUS," in the long term will the disease behave like MGUS?"
This suggested to me that you, like others I have seen here in the forum, might not fully appreciate exactly what doctors mean when they say that a patient's multiple myeloma is now "MGUS-like" or "smoldering-like". And because I've seen confusion on that issue many times before, I felt it would be helpful for many people to have the issue clarified.
I don't have anything against hope. If you go back and read other postings I've made, you'll see that I regularly offer encouragement and support to people here in the forum. I also try to help people better understand their disease, because I am convinced that a better educated myeloma patient is a myeloma patient who will live a longer, better life.
It was in that spirit that I formulated my previous postings in this thread.
Best wishes,
Cheryl
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