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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@pmm

@leslie2121
I admire your dedication to the examination of cause and effect in your journey. I definitely view that as positivity.
I always learn from the experience of others as we are all so different yet we walk a similar path.
Thank you for your thought of possible connections. I will definitely look for the studies.
Was there anything in particular that you can share that you believe helped to resolve that depression and dizziness?

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Good question!
If from an outside source then my own body may recover with time and rest.
2. Intentional stress reduction allowed my immune system to respond.
3. Curcumin? But I think it was already getting better.

As far as the depression (and anxiety), I did seek out an excellent LCSW with the oncology team. Yay to therapy! The psychiatrist didn’t recommend meds as it was an adjustment disorder. But I wonder…

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@leslie2121

Patty:
You are kind to always respond, and I recognize I could be more focused on gratitude and the positive direction things seem to be going.
Part of my persistence in researching this is hoping to be as healthy as possible for as long as I can.
I think the turmeric/curcumin supplements may be helping, and I wouldn’t have known about trying that if I hadn’t done my own research.
I also wonder ( and this is controversial!) what role the mRNA vaccine had in this. I believe in the benefits of vaccines- I even spent a few weeks volunteering to give shots for the County Medical Association during the pandemic, partly to get mine a little early. ( was an RN for my first career) I don’t think anyone was conspiring, and it ended the worst of the pandemic thankfully!

But for a few susceptible individuals it may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias.
There are a few studies just now being released online that the public can access that suggest this. I also have a family history of autoimmune disease as well as myself.

I don’t understand what “small peaks in several lanes” means. My doctor drew the SPEP for normal, and for MGUS. It’s a distinct sharp spike that indicates a monoclonal gammopathy. I don’t have that - just several little bumps in gamma area.. He was frankly baffled and said the only way to know is to do another BMB and it wasn’t warranted.

I’ve had significant fatigue, dizziness, and frankly some depression the past 2 years which has been slowly resolving. Trying to look forward now.

I appreciate this supportive group very much and wish you the best! 🥹

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@leslie2121
I admire your dedication to the examination of cause and effect in your journey. I definitely view that as positivity.
I always learn from the experience of others as we are all so different yet we walk a similar path.
Thank you for your thought of possible connections. I will definitely look for the studies.
Was there anything in particular that you can share that you believe helped to resolve that depression and dizziness?

REPLY
@pmm

@leslie2121
Wow! I don’t know about you, but I celebrate any lab work results that move the needle in the right direction.
I think you are wise to continue to utilize your established relationship with your hematologist as sadly, MGUS is a persistent critter. But as @kayabbott wisely said, the cancer risk is low. All good news and should be reassuring to you.
Do you feel some relief from MGUS worry or does this just reaffirm your positive outlook?

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Patty:
You are kind to always respond, and I recognize I could be more focused on gratitude and the positive direction things seem to be going.
Part of my persistence in researching this is hoping to be as healthy as possible for as long as I can.
I think the turmeric/curcumin supplements may be helping, and I wouldn’t have known about trying that if I hadn’t done my own research.
I also wonder ( and this is controversial!) what role the mRNA vaccine had in this. I believe in the benefits of vaccines- I even spent a few weeks volunteering to give shots for the County Medical Association during the pandemic, partly to get mine a little early. ( was an RN for my first career) I don’t think anyone was conspiring, and it ended the worst of the pandemic thankfully!

But for a few susceptible individuals it may have triggered autoimmune disorders, kidney inflammation and/or nephrotic syndrome and plasma cell dycrasias.
There are a few studies just now being released online that the public can access that suggest this. I also have a family history of autoimmune disease as well as myself.

I don’t understand what “small peaks in several lanes” means. My doctor drew the SPEP for normal, and for MGUS. It’s a distinct sharp spike that indicates a monoclonal gammopathy. I don’t have that - just several little bumps in gamma area.. He was frankly baffled and said the only way to know is to do another BMB and it wasn’t warranted.

I’ve had significant fatigue, dizziness, and frankly some depression the past 2 years which has been slowly resolving. Trying to look forward now.

I appreciate this supportive group very much and wish you the best! 🥹

REPLY
@leslie2121

After my dr’s appointment I was surprised to see this on the SERUM SPEP report:
“ Possible M spike seen in gamma region.”
Then:
“SMALL PEAKS IN SEVERAL LANES WITH NO CLEAR MONOCLONAL PROTEIN IDENTIFIED.”

I have been diagnosed over 2 years ago with Biclonal MGUS. It has been over a year since my last labwork and dr appt so was worried what the status was.
As I mentioned in a previous post my labs were stable or improved:
No more proteinuria
Significant decrease in FLCs
Everything else back in normal range.
M spike 0.2 previously

I go back in 6 months to repeat everything and if still good I go to yearly. He even said my PCP could follow me but I plan to stay with him.

Doc said he doesn’t know what’s going on but that it’s not causing me any problems and not likely to.

Thoughts????
Could this be going away?

Jump to this post

@leslie2121
Wow! I don’t know about you, but I celebrate any lab work results that move the needle in the right direction.
I think you are wise to continue to utilize your established relationship with your hematologist as sadly, MGUS is a persistent critter. But as @kayabbott wisely said, the cancer risk is low. All good news and should be reassuring to you.
Do you feel some relief from MGUS worry or does this just reaffirm your positive outlook?

REPLY

I wonder if connected though? I don’t have anything medically going on that would cause kidney issues and was a new (brief) finding that I’m hoping is resolved. It wasn’t much, and the eGFR went from 61 to 73, which I’m feeling better about.

I’m 65 and don’t think it’s going to progress in my lifetime.

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MGUS is a waiting game. I have IgA kappa light chain MGUS (8 years) and my M spike is at the detection limit. My kappa numbers have been creeping up over the years, but go up and down. I don't have any symptoms tied to MGUS, and get bloodwork every 6 months. If you have MGUS it doesn't go away, but the cancer risk is also 1% a year so low risk. Proteinuria is more tied to kidney issues so affected by diseases, meds, getting enough fluids.

REPLY

After my dr’s appointment I was surprised to see this on the SERUM SPEP report:
“ Possible M spike seen in gamma region.”
Then:
“SMALL PEAKS IN SEVERAL LANES WITH NO CLEAR MONOCLONAL PROTEIN IDENTIFIED.”

I have been diagnosed over 2 years ago with Biclonal MGUS. It has been over a year since my last labwork and dr appt so was worried what the status was.
As I mentioned in a previous post my labs were stable or improved:
No more proteinuria
Significant decrease in FLCs
Everything else back in normal range.
M spike 0.2 previously

I go back in 6 months to repeat everything and if still good I go to yearly. He even said my PCP could follow me but I plan to stay with him.

Doc said he doesn’t know what’s going on but that it’s not causing me any problems and not likely to.

Thoughts????
Could this be going away?

REPLY
@allstaedt57

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

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I have had 4 BMB. All were done by my oncologist at the time. The first one was very uncomfortable! Then I moved 800 miles, and have a new doctor. He has done 3 BMB on me, with no sedation, no ativan, nothing. He is just the tops in my book. No pain, no issue, no discomfort. In fact, I drove 2 hours home after each one! A lot has to do with technique, and general approach to patient care, in my opinion.
Ginger

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@allstaedt57

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

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@allstaedt57 agree! I receive most of my care in a teaching hospital and although I have great respect for the experiential learning piece, I am clear about communicating what I will agree to let a resident take the lead on.
My MGUS care is in a cancer treatment facility so that’s not a problem.
You definitely want someone doing the BMB who does several a week rather than someone who has done one or two before.

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@jeannie215

Hi everyone,

This has been such a great platform for information and support. Thank you everyone. My received a diagnosis of MGUS on 1/2/24. I am scheduled for a bone marrow biopsy, blood labs and a pet scan with nuclear medicine on March 13th at Memorial Sloan Kettering in Manhattan. Any advice on what I should expect? I'm planning to go to work the next day... I work with young autistic children... any thoughts?

Thans,
Jeannie

Jump to this post

Jeannie, I will be having my third BMB at Sloan on the 19th. My first was in my hometown of Asheville, NC. My Oncologist did it himself after providing me with 1 mg of Ativan IV push, 1 mg of Dilaudid IVP and topical Lidocaine. It was very comfortable, unlike my second one (first at MSK) which they only gave me a total of 1 mg of Ativan by mouth (PO) broken up in 0.5 mg followed a half hour later with another 0.5 mg and apparently some topical numbing factor. I'm sorry to say that was inadequate coverage. I found it to be very uncomfortable to the point of painful, but for a short duration. I have told my Provider that I do not want a Fellow/Resident doing my upcoming one - only a seasoned professional. I allowed a novice to practice on me the first time. Not again. Guess it depends on your tolerance for pain? I had no complications otherwise and no residual issues.

REPLY
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