1. < Blood Cancers & Disorders
Mentor

Bone marrow biopsy and/or blood tests for MGUS

Posted by Patty, Volunteer Mentor @pmm, May 10, 2023

Somebody was talking about some new blood test that would eliminate the need for bone marrow biopsy to definitively dx MGUS. I think this is interesting. Any of you bypassing the BMB in favor of these blood tests?

https://www.targetedonc.com/view/new-blood-tests-reduce-need-for-bone-marrow-biopsy-in-multiple-myeloma

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

dmdinapoli81 | @dmdinapoli81 | 6 days ago
In reply to @newfiesgirl1 "Hello all, I was diagnosed with MGUS in June 2023 and I've got some questions for..." + (show)
@newfiesgirl1

Hello all,
I was diagnosed with MGUS in June 2023 and I've got some questions for anyone willing to answer. I've been reading posts on here about people with MGUS having bone marrow biopsies done. Others that see their Hematologist every 3 months, some who see theirs every 6 months. Can I ask those that have had the biopsies done, what precipitated you into having the biopsy in the first place? Was it a progression of your MGUS? Was it at your request or your doctor's? When I was diagnosed, the doctor I had, who I did not like, told me I had nothing to worry about that my MGUS probably wasn't going to progress into anything further. This same doctor also told me that I would test negative for a Free Light Chain Test but he was going to run it anyway. I told him not to speak too quickly because I would show him otherwise. Which I did. I tested positive, but that didn't seem to faze him or change his diagnosis or outlook on me and my situation. It is time for me to go back for a follow up appointment and I've been granted a different doctor (undetermined at this time) to see. Can I also get opinions as to whether or not you guys think I should ask for a completely new work up by this new doctor so it is an unbiased diagnosis? Or?? I don't know what to do or ask for or expect....I need some good solid advice and help, no one around me has the answers as this isn't something they've dealt with. Thank you in advance for your help, knowledge and understanding with my many questions....I do sincerely appreciate any and all help and advice.

Jump to this post

My hemanoc was amazing. I was diagnosed with IGG Kappa MGUS at 36. I am 43 now and I started getting bloodwork every 6 mths but now we are doing 4 mths due to the numbers rising. They don’t rush to do a BMB until they run all the bloodwork. Your first appt should be a baseline. Full bloodwork plus Immunoglobulin panel, IFE and PE, Serum, kappa lambda ratio, Beta-2 Microglobulin Etc. and a 24hr IFE+Protein Electro. Skeletal survey. Then after those results they can diagnose. MGUS does not have symptoms so if you have some make sure you rule out autoimmune diseases which can skew numbers. Most everyone who is diagnosed with MGUS are older then 65 but and only 1% will move to myeloma or other blood cancers. Hope this helps

REPLY
2 replies
1pearl | @1pearl | 6 days ago
In reply to @newfiesgirl1 "I have to apologize to anyone that may have reached out and commented on any posts..." + (show)
@newfiesgirl1

I have to apologize to anyone that may have reached out and commented on any posts I have made. For whatever reason I wasn't getting notifications that anyone had responded to me until now, so again I apologize! I feel horrible! In response to this question tho, I've got a humdinger for you all and I'd like to get your opinions and feedback on what I'm about to share with you, with out sounding like a hypochondriac or even being accused of "wanting to be sick" as I have already been by some people close to me. As if anyone would WANT to be stricken with this crap right?? Ok, so I was diagnosed with MGUS by Mayo doctors in 2023, but I had a dislike for the doctor I had as I felt my concerns weren't taken seriously with respect to the diagnosis and subsequent tests, testing or lack of empathy. He was very condescending, always seemed to be in a hurry like he didn't have the time for me or I was wasting his because it was just MGUS. I was told repeatedly by him I had nothing to worry about, come back in a year. I was left with a lot of unanswered questions so I contacted Mayo and asked basically for a do over with an entirely different doctor. They did grant me that do over and in August 2024 I went back to the Mayo clinic. What I had wanted done and what I got were TWO ENTIRELY DIFFERENT THINGS!!! I had wanted all new labs, a new complete work up, like I was brand new to the facility. What I got was different doctor, looking at the same tests, she did run some tests... Some of the same ones that I had questions about with the first doctor. But because she had labs done first I couldn't discuss my concerns with her prior to them being done so I did them AGAIN. Well, guess what? She comes boppin in the room like a school girl and says, " Hi Karen, I've got some great news for you! I don't THINK you've got MGUS at all! I THINK it's your Benlysta medication for your Lupus putting the Monoclonal M protein in your body, giving it a false positive. Isn't that great news!? So we can cross that one off our problem list, what else can I help you with? EXCUSE ME? You're gonna waltz in here, announce to me, after a year has passed that I DON'T have MGUS, after a colleague of yours diagnosed me with it a year prior... say you don't THINK I've got it, but offer up NO kind of testing or let's take you off your Benlysta medication and then when we know for sure it's out of your system, let's rerun your tests just to make sure my theory is accurate. You offer nothing, but now I'm supposed to believe you?? This is unbelievable and incredulous!!!
Did I get hit over the head and is this all one really BAD dream or better yet a nightmare?
Well folks, to try and make this short... Lol... I was SO livid by the time I walked out of that room, I was seeing red. I ended up seeing a small town doctor, a wonderful Hematologist up north by me in Minnesota where I live and he told me of a test that the MAYO clinic does that can differentiate between medication and the actual Monoclonal M protein in a person's body. WAIT, WHAT??? Why didn't the 2nd boppin doctor do this test on me then, rather than just "THINKING" it, why not DO IT???
Well folks... That test came back and it showed that supposedly the Benlysta medication, which is a self administered shot I give myself once a week at home, does in fact, put the Monoclonal M protein in my body. So according to THIS doctor, I don't have MGUS. Now my question to all who have made it through this novel... And I'm sorry for this long story but you needed to hear it... Who do I believe and or what do I do from here? If I continue to question the MGUS diagnosis, here comes the hypochondriac Karen or the girl that WANTS to be sick, wants to have cancer... I can't even respond with something for that one... Or do I go about my business and feel like I'm the lucky girl and thank God each and every day for this blessing?? PLEASE share your thoughts and comments with me!! Thank you all in advance for taking the time to read my post. May God bless each and every one of you!! Hugs to all, please take good care of yourselves!!!

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Hi,
Wow, what an ordeal with all that! I agree with your question about which doc to believe. It seems like you are fine though with the extra testing and information gotten. It does seem very wrong for docs to say person has something they aren’t 100 percent sure they have in my opinion. But I know docs do that for many conditions I have learned.
Wishing you peace and wellness without stress worrying. Stay positive!

REPLY
1 reply
newfiesgirl1 | @newfiesgirl1 | 6 days ago
In reply to @amberl99 "I’ve been through the gauntlet with doctors so I certainly empathize. I’m also a nurse and..." + (show)
@amberl99

I’ve been through the gauntlet with doctors so I certainly empathize. I’m also a nurse and my joke is this: “ They call it a medical practice because they are practicing to get it right!” That’s my humor but it’s true.

I read up on Benlysta. Do you know some think that drug resolves MGUS? I’m not sure how peer reviewed that theory is but…if I were you, I’d put any concerns of MGUS out of my mind. With Lupus you have other things far more serious than MGUS to spend your energy on. With our limited energy in just doing life, my philosophy is to really discern what to perseverate on.

Hope you find my insights helpful.

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Hey Amber, thanks for your input and your advice. I truly appreciate it. You wanna know the newest weird thing that happened is that the Hematology department called me up and wanted to know if I wanted to come back and see the same doctor again. Huh? What for? I honestly didn't know how to answer them. But I've gave it some thought and I think I'm gonna just stick with what I know. Thanks again for your help. Take care
K

REPLY
newfiesgirl1 | @newfiesgirl1 | 6 days ago
In reply to @1pearl "Hi, Wow, what an ordeal with all that! I agree with your question about which doc..." + (show)
@1pearl

Hi,
Wow, what an ordeal with all that! I agree with your question about which doc to believe. It seems like you are fine though with the extra testing and information gotten. It does seem very wrong for docs to say person has something they aren’t 100 percent sure they have in my opinion. But I know docs do that for many conditions I have learned.
Wishing you peace and wellness without stress worrying. Stay positive!

Jump to this post

Hi there,
Thanks for the words of advice and encouragement. Sometimes I think a person knows what they need to do, but maybe they just want someone else say it out loud for them... Lol I don't know... In any event, thank you for your kind words and words of encouragement.
Take care
K

REPLY
bobweller | @bobweller | 5 days ago

What are you Kappa and Lamda free light chain levels?

REPLY
Mentor
Ginger, Volunteer Mentor | @gingerw | 5 days ago
In reply to @newfiesgirl1 "I have to apologize to anyone that may have reached out and commented on any posts..." + (show)
@newfiesgirl1

I have to apologize to anyone that may have reached out and commented on any posts I have made. For whatever reason I wasn't getting notifications that anyone had responded to me until now, so again I apologize! I feel horrible! In response to this question tho, I've got a humdinger for you all and I'd like to get your opinions and feedback on what I'm about to share with you, with out sounding like a hypochondriac or even being accused of "wanting to be sick" as I have already been by some people close to me. As if anyone would WANT to be stricken with this crap right?? Ok, so I was diagnosed with MGUS by Mayo doctors in 2023, but I had a dislike for the doctor I had as I felt my concerns weren't taken seriously with respect to the diagnosis and subsequent tests, testing or lack of empathy. He was very condescending, always seemed to be in a hurry like he didn't have the time for me or I was wasting his because it was just MGUS. I was told repeatedly by him I had nothing to worry about, come back in a year. I was left with a lot of unanswered questions so I contacted Mayo and asked basically for a do over with an entirely different doctor. They did grant me that do over and in August 2024 I went back to the Mayo clinic. What I had wanted done and what I got were TWO ENTIRELY DIFFERENT THINGS!!! I had wanted all new labs, a new complete work up, like I was brand new to the facility. What I got was different doctor, looking at the same tests, she did run some tests... Some of the same ones that I had questions about with the first doctor. But because she had labs done first I couldn't discuss my concerns with her prior to them being done so I did them AGAIN. Well, guess what? She comes boppin in the room like a school girl and says, " Hi Karen, I've got some great news for you! I don't THINK you've got MGUS at all! I THINK it's your Benlysta medication for your Lupus putting the Monoclonal M protein in your body, giving it a false positive. Isn't that great news!? So we can cross that one off our problem list, what else can I help you with? EXCUSE ME? You're gonna waltz in here, announce to me, after a year has passed that I DON'T have MGUS, after a colleague of yours diagnosed me with it a year prior... say you don't THINK I've got it, but offer up NO kind of testing or let's take you off your Benlysta medication and then when we know for sure it's out of your system, let's rerun your tests just to make sure my theory is accurate. You offer nothing, but now I'm supposed to believe you?? This is unbelievable and incredulous!!!
Did I get hit over the head and is this all one really BAD dream or better yet a nightmare?
Well folks, to try and make this short... Lol... I was SO livid by the time I walked out of that room, I was seeing red. I ended up seeing a small town doctor, a wonderful Hematologist up north by me in Minnesota where I live and he told me of a test that the MAYO clinic does that can differentiate between medication and the actual Monoclonal M protein in a person's body. WAIT, WHAT??? Why didn't the 2nd boppin doctor do this test on me then, rather than just "THINKING" it, why not DO IT???
Well folks... That test came back and it showed that supposedly the Benlysta medication, which is a self administered shot I give myself once a week at home, does in fact, put the Monoclonal M protein in my body. So according to THIS doctor, I don't have MGUS. Now my question to all who have made it through this novel... And I'm sorry for this long story but you needed to hear it... Who do I believe and or what do I do from here? If I continue to question the MGUS diagnosis, here comes the hypochondriac Karen or the girl that WANTS to be sick, wants to have cancer... I can't even respond with something for that one... Or do I go about my business and feel like I'm the lucky girl and thank God each and every day for this blessing?? PLEASE share your thoughts and comments with me!! Thank you all in advance for taking the time to read my post. May God bless each and every one of you!! Hugs to all, please take good care of yourselves!!!

Jump to this post

@newfiesgirl1 It sounds like you have had quite the journey so far! Of course, we don't want to hear we have MGUS, but if it is true, we want to be aware of it on the periphery. As mentioned, it rarely morphs into something more serious.

If I was in your shoes, I would go with the thought that the medication is causing the rise in Monoclonal M proteins, and work on getting something better into my system. Seeing that this is something you self-administer once a week, be careful how you time your blood work, choosing to do it just before an injection when that Benlysta is at its lowest in your system. Can you do that? Seeing that MGUS is a "watch and wait" situation, that's what you do, watch and wait until you feel something needs to be done.

I am truly sorry you experienced that interactions you did with the doctors. Sometimes it is not a good fit between patient and doctor, and we all have the right to feel comfortable with our medical team.
Ginger

REPLY
amberl99 | @amberl99 | 5 days ago
In reply to @dmdinapoli81 "My hemanoc was amazing. I was diagnosed with IGG Kappa MGUS at 36. I am 43..." + (show)
@dmdinapoli81

My hemanoc was amazing. I was diagnosed with IGG Kappa MGUS at 36. I am 43 now and I started getting bloodwork every 6 mths but now we are doing 4 mths due to the numbers rising. They don’t rush to do a BMB until they run all the bloodwork. Your first appt should be a baseline. Full bloodwork plus Immunoglobulin panel, IFE and PE, Serum, kappa lambda ratio, Beta-2 Microglobulin Etc. and a 24hr IFE+Protein Electro. Skeletal survey. Then after those results they can diagnose. MGUS does not have symptoms so if you have some make sure you rule out autoimmune diseases which can skew numbers. Most everyone who is diagnosed with MGUS are older then 65 but and only 1% will move to myeloma or other blood cancers. Hope this helps

Jump to this post

Wow, good information on what tests to get. I was just diagnosed a few weeks ago so when I get labs next in 3 months I’ll ask about some of the tests (skeletal survey, 24 hr one) he didn’t do.
Additionally, from my readings, it’s 1% per year. I interpret that meaning 20% if one lives 20 years. But at any rate, the risk is low. Many people have it before 65 but it is only found coincidentally in most cases. We caught it because of my symptoms of energy crashes and leg pain, and bunches of serial abnormal labs like anemia, low wbcs, rbcs as well as extra large red blood cells. I suspect my next set of numbers may change my diagnosis but I try to stay away from “borrowing trouble.”

REPLY
amberl99 | @amberl99 | 5 days ago
In reply to @dmdinapoli81 "My hemanoc was amazing. I was diagnosed with IGG Kappa MGUS at 36. I am 43..." + (show)
@dmdinapoli81

My hemanoc was amazing. I was diagnosed with IGG Kappa MGUS at 36. I am 43 now and I started getting bloodwork every 6 mths but now we are doing 4 mths due to the numbers rising. They don’t rush to do a BMB until they run all the bloodwork. Your first appt should be a baseline. Full bloodwork plus Immunoglobulin panel, IFE and PE, Serum, kappa lambda ratio, Beta-2 Microglobulin Etc. and a 24hr IFE+Protein Electro. Skeletal survey. Then after those results they can diagnose. MGUS does not have symptoms so if you have some make sure you rule out autoimmune diseases which can skew numbers. Most everyone who is diagnosed with MGUS are older then 65 but and only 1% will move to myeloma or other blood cancers. Hope this helps

Jump to this post

I found this information which I believe is credible. The article source is attached.
https://pmc.ncbi.nlm.nih.gov/articles/PMC1895159/
“MGUS is associated with progression to multiple myeloma or related malignancy at a rate of 1% per year. Thus the risk of malignancy for a 50-year-old patient with a 25-year life span is 25%. However, the risk of progression does not diminish even after 25 to 35 years, making lifelong follow-up by primary-care providers necessary in all persons diagnosed with MGUS.”

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