MGUS at young age

Posted by tnraemae @tnraemae, Wed, Jun 5 7:45am

Hello all. I am a 36 year old female and was just diagnosed with IgM kappa MGUS. There is very little information online about MGUS in people my age, especially given that the M-protein was detected in my urine and not my blood serum. Anyone with a similar experience of diagnosis at a young age and/or urine-not-serum detection MGUS? Thanks!

Liked by lydaneedsadvice

Hi @tnraemae, I'd like to invite some of the other members who have talked about being diagnosed with MGUS to share their experiences with you. While I cannot vouch for their age when they were diagnosed, they may have some experience and knowledge to share with you despite a potential age difference in diagnosis. @anniemaggie, @gingerw, @mari, and @susangs have all discussed MGUS here on Connect recently in the following discussions:

Groups > Blood Cancers & Disorders > MGUS
https://connect.mayoclinic.org/discussion/mgus-2d464e/
Groups > Blood Cancers & Disorders > MGUS & Osteoporosis
https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/

@tnraemae, If you are comfortable sharing, once your provider detected the M-protein, what was his or her suggestion moving forward as far as management or monitoring?

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I was diagnosed in 2012 with MGUS. At that time I did have any treatments but I was monitored every 3 mo. with blood testing. In Oct 2018 it had gone into multiple myeloma and it’s fortunate because of my frequent monitoring that I did not have any issues or symptoms from it. My treatments with chemo started in November and I am scheduled for SCT in August.

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@JustinMcClanahan

Hi @tnraemae, I'd like to invite some of the other members who have talked about being diagnosed with MGUS to share their experiences with you. While I cannot vouch for their age when they were diagnosed, they may have some experience and knowledge to share with you despite a potential age difference in diagnosis. @anniemaggie, @gingerw, @mari, and @susangs have all discussed MGUS here on Connect recently in the following discussions:

Groups > Blood Cancers & Disorders > MGUS
https://connect.mayoclinic.org/discussion/mgus-2d464e/
Groups > Blood Cancers & Disorders > MGUS & Osteoporosis
https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/

@tnraemae, If you are comfortable sharing, once your provider detected the M-protein, what was his or her suggestion moving forward as far as management or monitoring?

Jump to this post

Thank you for your reply! The hematologist recommended watchful waiting and that I have all the lab work repeated every few months. He was very surprised that it was detected at my age and not in the serum. Honestly, he really didn’t seem like he knew what to do with me.
I forgot to include in the original post: the protein detected was IgM kappa and was detected during immunofixation but not during electrophoresis.

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@tnraemae

Thank you for your reply! The hematologist recommended watchful waiting and that I have all the lab work repeated every few months. He was very surprised that it was detected at my age and not in the serum. Honestly, he really didn’t seem like he knew what to do with me.
I forgot to include in the original post: the protein detected was IgM kappa and was detected during immunofixation but not during electrophoresis.

Jump to this post

Hello @tnraemae I'm so sorry to hear of your diagnosis at this age. I'm also 36 going through my own blood disorders and I'm sort of getting the same feedback of just watchful waiting. I did the electrophoresis and the light chain kappa test. The electrophoresis only detected the polyclonal gamma globins for me, so no M spike (same with the light chain kappa test). I hope your Doctor continues to give you good care and doesn't ignore any of your concerns. Sending you positive thoughts.

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I have MGUS…mine shows slightly in bloodwork with a small M spike. I read sometimes if the cell is small, it'll pass into urine, and not be detected in the blood. I have not had a urine(Bence Jones) test, but mine shows Igg kappa in blood. I also have very low IGM, which are white cells that fight infection. My oncologist has me scheduled for a bone marrow test this Friday, June 14th, YIKES!! Trying not to scared!! I'm a patient at Florida Mayo clinic, so I'm in the best hands. Also, my dr has moved up my appointments to every 3 months. Now we'll see what bone marrow tells…UGHHH!

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@dazlin

I have MGUS…mine shows slightly in bloodwork with a small M spike. I read sometimes if the cell is small, it'll pass into urine, and not be detected in the blood. I have not had a urine(Bence Jones) test, but mine shows Igg kappa in blood. I also have very low IGM, which are white cells that fight infection. My oncologist has me scheduled for a bone marrow test this Friday, June 14th, YIKES!! Trying not to scared!! I'm a patient at Florida Mayo clinic, so I'm in the best hands. Also, my dr has moved up my appointments to every 3 months. Now we'll see what bone marrow tells…UGHHH!

Jump to this post

Sending you positive energy and thoughts @dazlin

Liked by dazlin

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@dazlin

I have MGUS…mine shows slightly in bloodwork with a small M spike. I read sometimes if the cell is small, it'll pass into urine, and not be detected in the blood. I have not had a urine(Bence Jones) test, but mine shows Igg kappa in blood. I also have very low IGM, which are white cells that fight infection. My oncologist has me scheduled for a bone marrow test this Friday, June 14th, YIKES!! Trying not to scared!! I'm a patient at Florida Mayo clinic, so I'm in the best hands. Also, my dr has moved up my appointments to every 3 months. Now we'll see what bone marrow tells…UGHHH!

Jump to this post

@dazlin Checking in with you to see how your bone marrow biopsy went, and the results, if you care to share? How are you feeling these days?
Ginger

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@tnraemae

Thank you for your reply! The hematologist recommended watchful waiting and that I have all the lab work repeated every few months. He was very surprised that it was detected at my age and not in the serum. Honestly, he really didn’t seem like he knew what to do with me.
I forgot to include in the original post: the protein detected was IgM kappa and was detected during immunofixation but not during electrophoresis.

Jump to this post

@tnraemae How are you feeling recently? Are you satisfied with how your doctor is treating you? Has your doctor been able to give you any insight as to why you may have shown this condition at an early age?
Ginger

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