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.

Profile picture for Patty, Volunteer Mentor @pmm

@lpro After conferring with my physicians I have opted not to have a BMB at this time. My numbers are very stable. No invasive medical procedure is without risk. If my numbers reached a threshold of concern, by all means I would agree to have one.
https://www.myeloma.org/videos/do-patients-mgus-always-need-undergo-bone-marrow-test

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I am lost now. I thought the diagnosis of MGUS included a bone marrow with < 10% plasma cells. Can that be confirmed any other way?

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I was diagnosed through a blood test which checked my various protein levels. Showed me with a band 1 abnormal M protein. It was at .7 and been checked two timesc since and will check every 3 months . If it stays stable no need for a bmb.

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Profile picture for lpro @lpro

I am lost now. I thought the diagnosis of MGUS included a bone marrow with < 10% plasma cells. Can that be confirmed any other way?

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Monoclonal gammopathy is, by definition, the presence of a monoclonal immunoglobulin ("M-spike") and/or abnormal free light chains ("FLCs") in blood, urine or both, produced by clonal plasma cells. A sufficiently high M-spike or sufficiently high/low K/L FLC ratio raises the risk level for progression to SMM or MM, and should prompt a BMB - in my case, a very low M-spike, but a K/L ration of effectively 0. If the BMB shows >10% plasma cells, then the diagnosis becomes either SMM or MM, depending on presence of symptoms and/or signs of organ damage. In other words, a BMB is not necessary for a diagnosis of MGUS. This is a very general account; there are multiple levels of complexity.

NB: I am not a physician, although I played one in various contexts (one of which was not television, for those of you who recall the reference) before I retired.

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Profile picture for Patty, Volunteer Mentor @pmm

@lpro After conferring with my physicians I have opted not to have a BMB at this time. My numbers are very stable. No invasive medical procedure is without risk. If my numbers reached a threshold of concern, by all means I would agree to have one.
https://www.myeloma.org/videos/do-patients-mgus-always-need-undergo-bone-marrow-test

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I watched the video at https://www.myeloma.org/videos/do-patients-mgus-always-need-undergo-bone-marrow-test
He talked about this iceland study done by IStopMM team published in 2024. I couldn't find the study anywhere. Can you point me to the study of blood test results to determine if a BMB will be >10%.

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The study you reference is not yet complete, but the abstract of a 2024 interim report is at https://www.acpjournals.org/doi/10.7326/M23-2540

In many cases, it's not clear to me why a study of how blood tests may predict BMB results matters. For anyone in the gray treatment/nontreatment zone - me, for example - BMB results matter a great deal. Of course, any medical procedure has risks, but a BMB is quite safe. I for one would not accept a prediction in place of the actual result.

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Profile picture for wesleym @wesleym

The study you reference is not yet complete, but the abstract of a 2024 interim report is at https://www.acpjournals.org/doi/10.7326/M23-2540

In many cases, it's not clear to me why a study of how blood tests may predict BMB results matters. For anyone in the gray treatment/nontreatment zone - me, for example - BMB results matter a great deal. Of course, any medical procedure has risks, but a BMB is quite safe. I for one would not accept a prediction in place of the actual result.

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Thanks for the link. It appears that the study is using patients: 1043 persons with IgG, IgA, light-chain, and biclonal MGUS detected by screening and an interpretable bone marrow sample.
I have IgM MGUS with levels going up very quickly. I wanted to get a prognosis based on this calculator. https://awmrisk.com/index.html
I already have all the values except the % needed from a BMB. If I had a good way of estimating the BMB results, I would put off having the actual BMB until it was estimated to be over 10%.
I'm now guessing that since the study doesn't include any IgM people, the authors knew it wouldn't be applicable because maybe IgM people are looking at WM rather than MM.

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Profile picture for newfiesgirl1 @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.

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@newfiesgirl1 The relationship of trust must be present in the doctor and patient relationship. I would make sure the doctor is expert in the MGUS/Myeloma diagnosis and causation. I go to the major Cancer hospital(an hour drive) in my area and have the Multiple Myeloma team overseeing my care. I do not try and 2nd guess them. I am a nurse and evaluated their credentials before I went. So first, find your major cancer center. Get a referral for appointment with the MGUS/Myeloma team. The big ones may even have a MGUS clinic. You may not even need a referral. Be clear to tell them u are diagnosed with MGUS at this time. IF it is a major center it will have at least a blood cancer section if not a MGUS/Myeloma section and chief. I feel very comfortable with them as I email them within new symptoms and concerns and they send me responses and anything they want me to do before next appointment. Many community cancer centers treat this disease as a "nothing to see here" thing. A true cancer center treats it like a precancerous conditions and monitors according to risk. I also keep my primary informed and she orders the usual blood tests for MGUS. So she is on top of disease as well. For example, I had some protein in my urine. My MGUS team when I mentioned this wants me to bring a 24 hour urine with me at next appointment. No urgency with this but an addition and followthrough. That tells me now not to worry to much as if it were urgent they would move my appointment, rest etc up. So I keep both sides informed. The other issue with MGUS is the blood work. The M spike does not always appear. However other things do appear ie as previously mentioned protein in urine. You have to first find the right physician attached to as big a center as you are reasonably close to and work with primary to keep informed and collaborative. My primary knows, regardless of her beliefs, I consider this very important especially at my age. 83! I don't want to progress any sooner than I should and maybe not at all. It is good, at least with my primary, to keep her informed. She doesn't want to miss a diagnosis and have them find it at the cancer center next appointment. Keeps them on their toes. Question- why are you letting someone else choose your cancer doctor? You should choose him or her. Just a thought. Look up credentials, patient commentary and also watch any videos they have posted. If you need a referral, find the doctor you want and have primary make a referral specifically to that doctor. Just thoughts due to my career spent as a nurse. You need to be your own best advocate as our medical system leaves something to be desired.

REPLY
Profile picture for newfiesgirl1 @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

@newfiesgirl1 I'm dealing w all this for 1st time too w HS no spleen reason for H/O ref to hospitals Hematologist. My LabCorp results kappa Lt chn ratio increasing, now 2.39 w IgM 4,566. Hem concnd wants bmt but I'm scared to have done in that might be corrupt results like my Mom's who died from treatment of unknown cancer.

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Profile picture for sunsetchris @sunsetchris

@newfiesgirl1 The relationship of trust must be present in the doctor and patient relationship. I would make sure the doctor is expert in the MGUS/Myeloma diagnosis and causation. I go to the major Cancer hospital(an hour drive) in my area and have the Multiple Myeloma team overseeing my care. I do not try and 2nd guess them. I am a nurse and evaluated their credentials before I went. So first, find your major cancer center. Get a referral for appointment with the MGUS/Myeloma team. The big ones may even have a MGUS clinic. You may not even need a referral. Be clear to tell them u are diagnosed with MGUS at this time. IF it is a major center it will have at least a blood cancer section if not a MGUS/Myeloma section and chief. I feel very comfortable with them as I email them within new symptoms and concerns and they send me responses and anything they want me to do before next appointment. Many community cancer centers treat this disease as a "nothing to see here" thing. A true cancer center treats it like a precancerous conditions and monitors according to risk. I also keep my primary informed and she orders the usual blood tests for MGUS. So she is on top of disease as well. For example, I had some protein in my urine. My MGUS team when I mentioned this wants me to bring a 24 hour urine with me at next appointment. No urgency with this but an addition and followthrough. That tells me now not to worry to much as if it were urgent they would move my appointment, rest etc up. So I keep both sides informed. The other issue with MGUS is the blood work. The M spike does not always appear. However other things do appear ie as previously mentioned protein in urine. You have to first find the right physician attached to as big a center as you are reasonably close to and work with primary to keep informed and collaborative. My primary knows, regardless of her beliefs, I consider this very important especially at my age. 83! I don't want to progress any sooner than I should and maybe not at all. It is good, at least with my primary, to keep her informed. She doesn't want to miss a diagnosis and have them find it at the cancer center next appointment. Keeps them on their toes. Question- why are you letting someone else choose your cancer doctor? You should choose him or her. Just a thought. Look up credentials, patient commentary and also watch any videos they have posted. If you need a referral, find the doctor you want and have primary make a referral specifically to that doctor. Just thoughts due to my career spent as a nurse. You need to be your own best advocate as our medical system leaves something to be desired.

Jump to this post

@sunsetchris I have Tufts Med Pref who only allow me to see Drs in my network w/in close proximity to my home so my choice ltd to local hospital H/O dept. I have HS & no spleen. Dr think I have MGUS due to IgM 4,655 latest results w increasing (since '24) kappa light chain ratio 2.39 and so want BMT. No symptoms.

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Profile picture for dcuste @dcuste

Thanks for the link. It appears that the study is using patients: 1043 persons with IgG, IgA, light-chain, and biclonal MGUS detected by screening and an interpretable bone marrow sample.
I have IgM MGUS with levels going up very quickly. I wanted to get a prognosis based on this calculator. https://awmrisk.com/index.html
I already have all the values except the % needed from a BMB. If I had a good way of estimating the BMB results, I would put off having the actual BMB until it was estimated to be over 10%.
I'm now guessing that since the study doesn't include any IgM people, the authors knew it wouldn't be applicable because maybe IgM people are looking at WM rather than MM.

Jump to this post

@dcuste what's ur IgM result? Mines 4,655 w kappa Lt chn ratio rising to 2.39. HS no spleen, no symptoms other than peeing more. Male Age 70.
Don't want BMT.

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