Hello everyone,
I am a new here. Last year my doctor ran a battery of tests due to chronic aliments and in the process I was told I have MGUS (I believe it is IgM). In June of 2016 my light chains were within normal range, so I was told to repeat testing in a year. My insurance and doctors changed as of January 2017. My new primary care physician ordered the repeat test in May of 2017 and I received a call informing me my kappa light chains were elevated at 3.21 (normal range referenced to be <2).
My primary care physician referred me to a rheumatologist for management. The rheumatologist told me I should be seeing a kidney specialist (although my kidneys levels are entirely normal). I now suspect that the doctors I have seen are not familiar with MGUS. I am assuming since the elevation is minor that repeating in another year should suffice, but I want to make sure.
In any case, what type of specialist is recommended for MGUS patients? I would like to pursue a referral for the appropriate department.
Thank you in advance for any advice / input, I really appreciate it!
Forums
9 posts
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Cynlorrine23 - Name: Cynthia
- Who do you know with myeloma?: MGUS (IgM) Self
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 37
Re: For MGUS, what kind of specialist should I see?
You should see a oncologist / hematologist that specializes in multiple myeloma.
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Barrows29 - Name: Dawn
- Who do you know with myeloma?: I have Smoldering Multiple Myeloma
- When were you/they diagnosed?: MGUS June 2017 SMM October 2018
- Age at diagnosis: 39
Re: For MGUS, what kind of specialist should I see?
Dawn is right. You should at least have an initial visit with a myeloma specialist to better evaluate your situation. IgM MGUS can evolve into several different conditions, so it's good to have a relationship with a specialist up front that understands your situation . However, you can likely continue routine testing with a non-specialist, if that's more convenient for you.
If you let us know what city you are in, folks on this site can make some recommendations as to treatment centers near you that have myeloma specialists.
If you let us know what city you are in, folks on this site can make some recommendations as to treatment centers near you that have myeloma specialists.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: For MGUS, what kind of specialist should I see?
Thank you both so much for your responses, I appreciate your feedback! I am in the San Diego area currently.
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Cynlorrine23 - Name: Cynthia
- Who do you know with myeloma?: MGUS (IgM) Self
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 37
Re: For MGUS, what kind of specialist should I see?
Hi Cynthia,
UCSD would be a good, local choice to seek out a myeloma specialist. There are also a couple of folks on this forum that make the short trek up from San Diego to West Hollywood to see Dr. Berenson (he's my specialist). Some other folks have also used the City of Hope in Duarte.
Whenever I hear of someone with an IgM-type plasma cell disorder, I usually refer them to this article so that they are better prepared to ask some good questions of the specialist.
J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)
Good luck and let us know how your first visit with a specialist goes.
UCSD would be a good, local choice to seek out a myeloma specialist. There are also a couple of folks on this forum that make the short trek up from San Diego to West Hollywood to see Dr. Berenson (he's my specialist). Some other folks have also used the City of Hope in Duarte.
Whenever I hear of someone with an IgM-type plasma cell disorder, I usually refer them to this article so that they are better prepared to ask some good questions of the specialist.
J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein", The Hematologist, Sep 15, 2014 (full text of article)
Good luck and let us know how your first visit with a specialist goes.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: For MGUS, what kind of specialist should I see?
Thank you so much for taking the time to reply and for sharing this article. Definitely filled with quite a bit of useful information that has helped me form some questions for my next visit.
My kappa levels converted from mg/dl to mg/l is only at 32.1. Anything below 100 seems to be alright based on what I am reading. I did get the ball rolling for a referral to the appropriate specialist for when it is time to retake my free light chain levels.
I will definitely keep in touch on here. Seems like a great group of people with much knowledge this subject matter! Again, many thanks for all the time and assistance, I really appreciate it!
My kappa levels converted from mg/dl to mg/l is only at 32.1. Anything below 100 seems to be alright based on what I am reading. I did get the ball rolling for a referral to the appropriate specialist for when it is time to retake my free light chain levels.
I will definitely keep in touch on here. Seems like a great group of people with much knowledge this subject matter! Again, many thanks for all the time and assistance, I really appreciate it!
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Cynlorrine23 - Name: Cynthia
- Who do you know with myeloma?: MGUS (IgM) Self
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 37
Re: For MGUS, what kind of specialist should I see?
I'm also wondering what sort of specialist I should see, given my IgM MGUS diagnosis. I don't know if my current hematologist-oncologist has MGUS as a specialty. He's at a local university hospital. He hasn't explained much of anything and doesn't listen to me. I had a bone marrow biopsy which ruled out Waldenstrom's. But he's confident in his diagnosis and last labs he waited 6 months, now 3 months.
But I'm wondering if I need a second opinion and whether there are doctors who specialize in IgM MGUS.
The recommendations above are helpful given that I'm also in southern California.
But I'm wondering if I need a second opinion and whether there are doctors who specialize in IgM MGUS.
The recommendations above are helpful given that I'm also in southern California.
Re: For MGUS, what kind of specialist should I see?
Hi One More,
It's a bit upsetting that you say that your doctor "hasn't explained much of anything and doesn't listen to me." Personally, I think that the top criteria for selecting a specialist is to find one with the best understanding of the latest science behind myeloma treatments, coupled with a firm grasp of the latest thinking in myeloma treatments and a treatment philosophy that matches your own. But having a decent bedside manner and taking the time to address your concerns and explain things thoroughly are certainly also critical factors when selecting a specialist.
I don't think that you will find a specialist that focuses just on IgM moncolonal gammopathies. But you certainly can find myeloma specialists that have quite a bit of experience with IgM gammopathies. I can't speak for the City of Hope and UCSD regarding their level of IgM expertise (others on the forum may have some experience), but I know that Dr. Berenson in southern California has certainly worked with IgM patients over the years. If you are up for a road trip or flying elsewhere (which is what I do to see my specialist every year or two), other major cancer centers such as UCSF, Seattle Cancer Care Associates, the Mayo Clinic, Dana Farber, Memorial Sloan-Kettering, etc will also have myeloma specialist that have seen and treated quite a few IgM patients over the years. You can also always consult from time to time with a myeloma specialist and then just utilize a local oncologist to run your routine tests. This is in fact what I do.
Hope this helps a bit.
It's a bit upsetting that you say that your doctor "hasn't explained much of anything and doesn't listen to me." Personally, I think that the top criteria for selecting a specialist is to find one with the best understanding of the latest science behind myeloma treatments, coupled with a firm grasp of the latest thinking in myeloma treatments and a treatment philosophy that matches your own. But having a decent bedside manner and taking the time to address your concerns and explain things thoroughly are certainly also critical factors when selecting a specialist.
I don't think that you will find a specialist that focuses just on IgM moncolonal gammopathies. But you certainly can find myeloma specialists that have quite a bit of experience with IgM gammopathies. I can't speak for the City of Hope and UCSD regarding their level of IgM expertise (others on the forum may have some experience), but I know that Dr. Berenson in southern California has certainly worked with IgM patients over the years. If you are up for a road trip or flying elsewhere (which is what I do to see my specialist every year or two), other major cancer centers such as UCSF, Seattle Cancer Care Associates, the Mayo Clinic, Dana Farber, Memorial Sloan-Kettering, etc will also have myeloma specialist that have seen and treated quite a few IgM patients over the years. You can also always consult from time to time with a myeloma specialist and then just utilize a local oncologist to run your routine tests. This is in fact what I do.
Hope this helps a bit.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: For MGUS, what kind of specialist should I see?
Hi One More,
I am very sorry to hear about your experiences with your current doctor. I would definitely recommend seeking a second opinion if you don't feel completely comfortable or confident in the information that is being provided to you. It is important to have a doctor that you feel listens to all of your concerns and takes the time to answer all of your questions. I saw an hematologist-oncologist 3 months ago that I wasn't fully sold on, so I am seeing a new one in May for my next draw. I also have IgM type.
I am very sorry to hear about your experiences with your current doctor. I would definitely recommend seeking a second opinion if you don't feel completely comfortable or confident in the information that is being provided to you. It is important to have a doctor that you feel listens to all of your concerns and takes the time to answer all of your questions. I saw an hematologist-oncologist 3 months ago that I wasn't fully sold on, so I am seeing a new one in May for my next draw. I also have IgM type.
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Cynlorrine23 - Name: Cynthia
- Who do you know with myeloma?: MGUS (IgM) Self
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 37
9 posts
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