Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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@colleenyoung

@karishmagupta, going through the diagnostic process is hard, especially the waiting. It sounds like you have received the results of your mother's bone marrow biopsy before meeting her medical team to discuss the results and next steps. Fellow patients can't interpret these results for you on a forum like this one.

Biopsy results are only one piece of the puzzle in the diagnostic process. Your mother's medical team is the only one who can interpret the results along with her medical history, other studies and clinical exam.

I know you are worried. When does your mom have an appointment to review the results and next steps with her doctor?

When is your next appointment?

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Can anybody please explain these biopsy reports .I shall be highly grateful to you

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@karishmagupta

She will be getting her appointment till Friday 3rd January.I got this aspiration report from lab today only but the biopsy report will be coming on Friday ..i am not able get the meaning of these ones .So was a bit worried .I asked here with the hope that if someone gives me some clarity and I can have a bit peaceful sleep at night ..It's ok I can understand here the consultation is more important

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Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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@karishmagupta

Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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Viewpoint from a patient who was diagnosed with high-risk MGUS (6-8% plasma cells in 2 BMBs, light chains 100:1 lambda:kappa, M-spike, BJ proteins in urine) about 9 months ago, teetering on edge of treat / watch closely): you DO NOT NEED anyone here to "decode" your mother's labs. You need your mother's doctor (preferably hemo/onco) to do so. This is complex stuff. The most people here can do is wish her (and you) well.

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@karishmagupta

Pls somebody decode my reports of biopsy for my mother ..I am completely worried kindly please let me know

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@karishmagupta We are not medical professional here. We are fellow patents and caregivers who share our experiences and offer support to others going through the same thing.

Please take to your mother's doctors for them to tell you what the biopsy results indicate. They are your best source for information for your mother's individual case.
Ginger

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I was diagnosed with MGUS IgG lambda in June 2023. My abnormal protein band 1 was 1.6 g/dl , was 1.6 in December 2023 and in December 2024 it has increased to 2.0 g/dl. I am a 59 year old female. I have a weakened immune system, Factor V Leiden (genetic clotting disorder) and recently had surgery to repair gluteal tendons after a bone in my femur splintered from my greater trochanter taking my tendons with it.

I am concerned about the increase in my monoclonal values and return to hem/onc in April for retesting and scheduling bone marrow biopsy and CT body scan. I have 4 grandchildren and amazing family but I do not share my concerns because I do not want them to see me as anything less than a vibrant healthy human being. How do you stay positive. I meditate, walk, paint but I am always thinking about how i can get rid of this.

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@donna195

I was diagnosed with MGUS IgG lambda in June 2023. My abnormal protein band 1 was 1.6 g/dl , was 1.6 in December 2023 and in December 2024 it has increased to 2.0 g/dl. I am a 59 year old female. I have a weakened immune system, Factor V Leiden (genetic clotting disorder) and recently had surgery to repair gluteal tendons after a bone in my femur splintered from my greater trochanter taking my tendons with it.

I am concerned about the increase in my monoclonal values and return to hem/onc in April for retesting and scheduling bone marrow biopsy and CT body scan. I have 4 grandchildren and amazing family but I do not share my concerns because I do not want them to see me as anything less than a vibrant healthy human being. How do you stay positive. I meditate, walk, paint but I am always thinking about how i can get rid of this.

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@donna195
I don’t let my health issues define me. I stay active in my community and enjoy family time when they’re busy schedules will allow. It sounds as though your medical team is on top of it and that they’re scheduling scans and a BMB. That’s a good thing.
When you have chronic health conditions, it’s easy to stay focused on that and not the happy things. But MGUS is not cancer and the risk of progression to cancer is very small. It’s important to keep that in perspective.
I’m sure your family does view you as a vital, healthy person. The truth is that you are a vital person who has some health challenges. That doesn’t take away from your value as a human being. As I age, I am vexed by the aging process and the decline in my physical stamina. I still do the things that bring me joy, but I do them slower and with less frequency. I feel no shame in that.
You wrote that you don’t really discuss your health with your family and while I understand that, I do hope that you have people with whom you can share. It’s great to have other people who know what you’re going through and in whom you can confide.
Like you, I wish I could get rid of the MGUS but unfortunately, it’s sticking around. We will probably die from something totally unrelated, however. So I stay positive by living my life fully, doing as much as I can to stay fully engaged and understanding that my risk from MGUS is very small for progression to blood cancer. I stay connected to other people who have a similar journey through Mayo Clinic Connect. It really helps to know that I’m not alone.
I hope your April appointments are reassuring. Will you let me know how they go?

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@pmm

@donna195
I don’t let my health issues define me. I stay active in my community and enjoy family time when they’re busy schedules will allow. It sounds as though your medical team is on top of it and that they’re scheduling scans and a BMB. That’s a good thing.
When you have chronic health conditions, it’s easy to stay focused on that and not the happy things. But MGUS is not cancer and the risk of progression to cancer is very small. It’s important to keep that in perspective.
I’m sure your family does view you as a vital, healthy person. The truth is that you are a vital person who has some health challenges. That doesn’t take away from your value as a human being. As I age, I am vexed by the aging process and the decline in my physical stamina. I still do the things that bring me joy, but I do them slower and with less frequency. I feel no shame in that.
You wrote that you don’t really discuss your health with your family and while I understand that, I do hope that you have people with whom you can share. It’s great to have other people who know what you’re going through and in whom you can confide.
Like you, I wish I could get rid of the MGUS but unfortunately, it’s sticking around. We will probably die from something totally unrelated, however. So I stay positive by living my life fully, doing as much as I can to stay fully engaged and understanding that my risk from MGUS is very small for progression to blood cancer. I stay connected to other people who have a similar journey through Mayo Clinic Connect. It really helps to know that I’m not alone.
I hope your April appointments are reassuring. Will you let me know how they go?

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Thank you for your kind words and gentle reminder to stay positive . I am strong, have an amazing family and have wonderful friends that I can share with. Once I have my next round of tests, I will let you know.

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I am a 66 year old male and newly introduced to the MGUS journey. Started with an echocardiogram showing an asymmetrical, moderately hypertrophic heart septal wall. My oral history report with providers at the University of Utah, HCM clinic triggered reasons to test for amyloid. Labs revealed monoclonal spike 0.99g/dl, IgG type lambda, but my free light chain ratio normal, 24 hour urine was negative.
Heart work up included PYP scan which was negative and MRI which also showed no clear signals of amyloid. My heart wall is a little thicker than normal 1.2cm but cardiologist thinks that is in a normal range for my size 6’5”/250lbs. Conclusion on heart; no reason at this time for heart biopsy.
My visit with amyloid/multiple myeloma specialist at the Huntsman Cancer Center in Salt Lake City, has me trending towards a MGUS diagnosis but next week is bone marrow biopsy, whole body bone scan and abdominal biopsy.

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@thencea

I was diagnosed this summer and am swimming in data from FISH tests and bone marrow biopsies. My cytogenetics indicate a higher probability of progression to MM from MGUS. Does anyone else have these markers and be willing to share your story?

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I've had MGUS for 8 years. I had a BMB this summer and plasma level was 15% and 1q21 gain (chromosome 1, one replication at location 21) which should have me in the SMM range, but doctor says still MGUS. My kappa is almost 300 and kappa/lambda ~28. I'm 70 and still asymptomatic. The 1q21 gain is associated with somewhat higher chance of it turning to MM and less responsive to treatment, but about 40% of people that have MM have 1q21 gain or amplification (tripled rather than doubled). I try to spend my time doing fun stuff, hobbies, biking, cooking, and not stressing over what might be, because MGUS is a waiting game. Even if someone has SMM it may not morph to MM, and if it does then the avg. prognosis is still for years of biking. ResearchGate has a lot of peer reviewed papers on MGUS, SMM, and MM research.

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@colleenyoung

@thencea, sometimes having so much data can make you feel like you're drowning in information overload. I hope you've seen the helpful replies from @pmm @lorkish and others.

What monitoring schedule has your hematologist suggested? How are you feeling about the follow-up?

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I do feel some comfort and relief. I'm on a six month "check in" schedule but my hematologist also wants me to have an oncology consult since I also have microcytic anemia which may or may not be related. I also have some neuropathy in my feet which, again, was diagnosed before my quite stable MGUS and may because I abuse my feet via outdoor activity. Just getting OK with a lot of unknowns...

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