Hello.
I was diagnosed in 2010 with MGUS (IgM lambda). I am not monitored by any hematologist because I cannot find one who wants to see me since I do not have myeloma. I asked my family doctor to order a 24-hour urine and my Bence Jones proteins are up at 160, and my kappa and lambda chains have all doubled since the last test done in 2010 but are still in the normal range. I have neuropathy, and my blood pressure is currently elevated despite being on blood pressure medication. I have also developed type 2 diabetes.
My family doctor said that Bence Jones Proteins are harmless, do not damage the kidneys, and I should not need any further testing or monitoring. He also doesn't see a need to do any updated serum levels of IgM levels since they were still in normal range back in 2010.
Are Bence Jones Proteins harmless to the kidneys? Can anyone recommend a good MGUS specialist in Philadelphia or in New Jersey?
Thank You.
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Re: MGUS and Bence Jones proteins
Hi NewJersey8,
Welcome to the forum. I'm glad you reached out to this place.
Bence Jones proteins are just another name for free light chains when they are found in one's urine.
When you say your kappa and lambda values are still in the normal range, do you mean your serum free light chain values or your urine free light chain values?
When one has very large quantities of free light chains in one's blood, then they can eventually cause kidney damage ... but the quantities need to be pretty significant for that to occur.
Note that IgM type MGUS is not that common. Also, if IgM MGUS evolves into a more problematic disease, that disease tends to be lympohma, Waldnesrom's macroglobulinemia or amyloidosis....and less typically multiple myeloma. See this article for a more detailed writeup on the subject:
RA Kyle et al, "Long-term follow-up of IgM monoclonal gammopathy of undetermined significance," Blood, Nov 15, 2003 (full text of article)
It would really be a good idea to see a myeloma specialist and to get on a more regular and complete testing schedule, and perhaps a bone marrow biopsy if you've never had one done. I'm sure some of the folks on this forum that live in that part of the country will chime in with their recommendations on where to find some good multiple myeloma specialists.
Hope this helps a bit.
Welcome to the forum. I'm glad you reached out to this place.
Bence Jones proteins are just another name for free light chains when they are found in one's urine.
When you say your kappa and lambda values are still in the normal range, do you mean your serum free light chain values or your urine free light chain values?
When one has very large quantities of free light chains in one's blood, then they can eventually cause kidney damage ... but the quantities need to be pretty significant for that to occur.
Note that IgM type MGUS is not that common. Also, if IgM MGUS evolves into a more problematic disease, that disease tends to be lympohma, Waldnesrom's macroglobulinemia or amyloidosis....and less typically multiple myeloma. See this article for a more detailed writeup on the subject:
RA Kyle et al, "Long-term follow-up of IgM monoclonal gammopathy of undetermined significance," Blood, Nov 15, 2003 (full text of article)
It would really be a good idea to see a myeloma specialist and to get on a more regular and complete testing schedule, and perhaps a bone marrow biopsy if you've never had one done. I'm sure some of the folks on this forum that live in that part of the country will chime in with their recommendations on where to find some good multiple myeloma specialists.
Hope this helps a bit.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS and Bence Jones proteins
Thank you for your reply. My testing was only urine. I have had no blood testing since 2010.
My urine free kappa excretion / day is 36.62 and the urine free lambda excretion per day is 7.96. The kappa lambda ratio is 4.60 (reference range 2.04-10.37).
I also have albumin in the urine, alpha-1 and alpha-2.
I appreciate your input and thank you again!
newjersey8
My urine free kappa excretion / day is 36.62 and the urine free lambda excretion per day is 7.96. The kappa lambda ratio is 4.60 (reference range 2.04-10.37).
I also have albumin in the urine, alpha-1 and alpha-2.
I appreciate your input and thank you again!
newjersey8
Re: MGUS and Bence Jones proteins
Hi NewJersey8,
There is a good size multiple myeloma group at Penn in Philadelphia and I'm sure just about any of the members of that team would be worth seeing. If I recall correctly, Dr. Brendan Weiss, who is a member of that group, has an interest in early stage monoclonal gammopathies such as MGUS and smoldering multiple myeloma.
Of course, there is also the multiple myeloma group at Sloan-Kettering in New York, which is headed by Dr. Ola Landgren, who has done A LOT of work focused on MGUS and smoldering multiple myeloma. I believe he also has one or two colleagues on that team who have worked with him on a lot of that research -- for example, Dr. Neha Korde.
Those are the two groups I probably would particularly recommend. However, you'd probably be in good hands with any of the multiple myeloma groups in the area, including the John Theurer Center in Hackensack, and Weill-Cornell and others in New York.
I would add that you'll probably be hard pressed to find someone who focuses solely on MGUS. Usually, someone who is very knowledgeable about MGUS is more generally a multiple myeloma specialist.
There is a good size multiple myeloma group at Penn in Philadelphia and I'm sure just about any of the members of that team would be worth seeing. If I recall correctly, Dr. Brendan Weiss, who is a member of that group, has an interest in early stage monoclonal gammopathies such as MGUS and smoldering multiple myeloma.
Of course, there is also the multiple myeloma group at Sloan-Kettering in New York, which is headed by Dr. Ola Landgren, who has done A LOT of work focused on MGUS and smoldering multiple myeloma. I believe he also has one or two colleagues on that team who have worked with him on a lot of that research -- for example, Dr. Neha Korde.
Those are the two groups I probably would particularly recommend. However, you'd probably be in good hands with any of the multiple myeloma groups in the area, including the John Theurer Center in Hackensack, and Weill-Cornell and others in New York.
I would add that you'll probably be hard pressed to find someone who focuses solely on MGUS. Usually, someone who is very knowledgeable about MGUS is more generally a multiple myeloma specialist.
Re: MGUS and Bence Jones proteins
NewJersey8,
Cheryl provided some great suggestions on where to find some multiple myeloma specialists.
I also came across this article on IgM MGUS patients. It really underscores that IgM MGUS patients need to be followed more closely than non-IgM MGUS patients and may require some additional tests now and then (beyond the usual MGUS monitoring tests which includes SPEPs, IFEs, 24 hour UPEPs, quantified immunoglobulins, CBCs, metabolic panels, etc).
Note that the author, Dr. Mikhael of the Mayo Clinic, is a very well-respected multiple myeloma specialist.
J Mikhael,"Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text)
Cheryl provided some great suggestions on where to find some multiple myeloma specialists.
I also came across this article on IgM MGUS patients. It really underscores that IgM MGUS patients need to be followed more closely than non-IgM MGUS patients and may require some additional tests now and then (beyond the usual MGUS monitoring tests which includes SPEPs, IFEs, 24 hour UPEPs, quantified immunoglobulins, CBCs, metabolic panels, etc).
Note that the author, Dr. Mikhael of the Mayo Clinic, is a very well-respected multiple myeloma specialist.
J Mikhael,"Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text)
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS and Bence Jones proteins
NewJersey8:
I have been pondering your posting and I must say that it troubles me. Perhaps there is a lot of background information that you have not provided, but what you have set forth is troubling.
I had MGUS for about five years before progressing to smoldering myeloma and then Stage I active myeloma. During my MGUS years, I was regularly monitored (every six months) by a hematologist. During those years my kappa and lambda light chains were always normal, but my M-spike kept gently creeping upward. My doctor for a long time assured me that I was doing just fine, but that did not mean that he refused to monitor my MGUS condition.
During those years I lived in Princeton, New Jersey. If you live in that area and are still looking for a hematologist, let me know; perhaps I could help you.
MGUS, as I am sure you know, does not always develop into myeloma. Still, in my opinion, it is something that should be monitored, if only for your peace of mind. I have never encountered a general practitioner who even knew what MGUS was. It does surprise me very much that you have not found a hematologist in New Jersey who thinks that monitoring of MGUS is prudent.
I have been pondering your posting and I must say that it troubles me. Perhaps there is a lot of background information that you have not provided, but what you have set forth is troubling.
I had MGUS for about five years before progressing to smoldering myeloma and then Stage I active myeloma. During my MGUS years, I was regularly monitored (every six months) by a hematologist. During those years my kappa and lambda light chains were always normal, but my M-spike kept gently creeping upward. My doctor for a long time assured me that I was doing just fine, but that did not mean that he refused to monitor my MGUS condition.
During those years I lived in Princeton, New Jersey. If you live in that area and are still looking for a hematologist, let me know; perhaps I could help you.
MGUS, as I am sure you know, does not always develop into myeloma. Still, in my opinion, it is something that should be monitored, if only for your peace of mind. I have never encountered a general practitioner who even knew what MGUS was. It does surprise me very much that you have not found a hematologist in New Jersey who thinks that monitoring of MGUS is prudent.
Re: MGUS and Bence Jones proteins
I want to thank everyone for all of your replies. I decided to call Dr. Brendan Weiss at Penn and have an appointment next week. I really want to be monitored and have taken all of your suggestions to heart and made the appointment. I don't think my small town South Jersey doctor exactly knows too much about MGUS. I will post next week after my appointment.
Thanks again!
new jersey 8
Thanks again!
new jersey 8
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