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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@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?

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@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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@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! 🥹

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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! 🥹

Jump to this post

@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
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

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…

Jump to this post

@leslie2121
Oh I’m glad to hear you found a good LCSW match. This is Social Work month. Another reason to celebrate.
Stress can be crippling. For me, it makes me feel physically weak and even nauseous. Getting a handle on that is no small feat.

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@pmm

@leslie2121
Oh I’m glad to hear you found a good LCSW match. This is Social Work month. Another reason to celebrate.
Stress can be crippling. For me, it makes me feel physically weak and even nauseous. Getting a handle on that is no small feat.

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Amazing how the mind and body are so intertwined!

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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! 🥹

Jump to this post

@leslie2121 I personally wouldn't look at the result of one set of labs as a concern. Look at the trend. You mentioned you will go back in 6 months. If there is any reason you don't feel comfortable with that, ask to be seen at three months.

And, as Patty @pmm mentioned, stick with your hematologist/oncologist, please. They are better educated and better equipped to address concerns that may arise, and "catch" a change.

Good to hear that fatigue, dizziness, depression seems to be lifting for you. There can be many small reasons for these symptoms, that come together and can create a larger presence. What can you think of that has helped you get over these hurdles? Diet change? More/different exercises? Mindful work to address the issues? Just curious, and it might help others!
Ginger

REPLY
@gingerw

@leslie2121 I personally wouldn't look at the result of one set of labs as a concern. Look at the trend. You mentioned you will go back in 6 months. If there is any reason you don't feel comfortable with that, ask to be seen at three months.

And, as Patty @pmm mentioned, stick with your hematologist/oncologist, please. They are better educated and better equipped to address concerns that may arise, and "catch" a change.

Good to hear that fatigue, dizziness, depression seems to be lifting for you. There can be many small reasons for these symptoms, that come together and can create a larger presence. What can you think of that has helped you get over these hurdles? Diet change? More/different exercises? Mindful work to address the issues? Just curious, and it might help others!
Ginger

Jump to this post

Ginger:
I wasn’t wanting more frequent appointments and was actually thrilled with the positive direction the labs are taking.
And I do plan to keep seeing the specialist- though he said he could direct a pcp in what exactly to look for, but I don’t have a super great pcp so will keep seeing the MM doc.

Anyway- I am baffled why things got better! I have had a pretty healthy diet, and exercise regularly with long walks up hills, gardening & housework. I’ve added some supplements?
Maybe stress related?

REPLY
@leslie2121

Ginger:
I wasn’t wanting more frequent appointments and was actually thrilled with the positive direction the labs are taking.
And I do plan to keep seeing the specialist- though he said he could direct a pcp in what exactly to look for, but I don’t have a super great pcp so will keep seeing the MM doc.

Anyway- I am baffled why things got better! I have had a pretty healthy diet, and exercise regularly with long walks up hills, gardening & housework. I’ve added some supplements?
Maybe stress related?

Jump to this post

@leslie2121 Oh, stress can definitely play a big part in our health! Sometimes it sneaks up and we don't realize the part it is playing.
Ginger

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@mascot

A lot more(250) lambda, 20%in bone marrow and the checkup is next week so will find out more then!
Mascot

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Hi @mascot. I received my bone marrow biopsy and am 22%. I am "Smoldering" as well per the hematologist. How did your checkup go?

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