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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@gina5009

I have just been diagnosed, although no one is excited at this point. I had 14 lymph glands removed in 1968 and had a low Red Cell Count all my life. No radiation, chemo etc. Believe it or not I will be 92 in March. I have been told to come back in 6 months and not to be concerned???
Georgina

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Welcome Gina, it does seem odd to watch and wait but as Ginger noted, that’s what we do. Your Oncologist/hematologist will draw blood every 3 to 6 months and compare the results with your previous draws. If there is a change in the trajectory there will be a discussion about treatment.
I was anxious at first, but I find that only makes me feel bad so I have learned to chill and trust the process. I was diagnosed about two years ago and my numbers are pretty stable. Statistically, very few people with MGUS progress to smoldering or full Multiple Myeloma.
I try to keep my glass half full instead of half empty and focus on the good news that every three months I get a full check-up of the blood that keeps me going.
Hang in there. Live each day.
Patty

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@gina5009

I have just been diagnosed, although no one is excited at this point. I had 14 lymph glands removed in 1968 and had a low Red Cell Count all my life. No radiation, chemo etc. Believe it or not I will be 92 in March. I have been told to come back in 6 months and not to be concerned???
Georgina

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@gina5009 Welcome to Mayo Clinic Connect! As you read through the posts here, you will discover that the majority of us are told the same thing you have been told. It is a "watch and wait" situation. And, we learn to not let this diagnosis be a big stumbling block to living our best life. Patients often go many years with no progression to another level, and quarterly or semi-annual bloodwork is done for the monitoring.
Ginger

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I have just been diagnosed, although no one is excited at this point. I had 14 lymph glands removed in 1968 and had a low Red Cell Count all my life. No radiation, chemo etc. Believe it or not I will be 92 in March. I have been told to come back in 6 months and not to be concerned???
Georgina

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You have to have trust in your treatment efficacy so I’m glad you kept looking for a doc you feel good about.
I like my local HEM/ONC guy but if I ever question his diligence I would go to Mayo or MD Anderson. I’m 70 but hope to have some good years left to spend with my family and do a little travel.
I love the humor in this thread. This is harsh having MGUS lurking like a mugger in the back of your mind. If you allow it to dominate your thoughts it impacts your ability to enjoy each day. I try to laugh as much as possible. Well done!

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@redgiles

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas

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Hello from Galveston not far from MD Anderson. Can I ask what routine test diagnosed it? Thanks

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@redgiles

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas

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I switched from one medical provider to another due to not being able to get the care I felt was needed. I have to get new bloodwork done for my new physician because he felt the previous doctor wasn’t giving my issue enough attention. I also have anemia and that is the issue that was receiving the attention. However, according to my bloodwork from Aug 2022, the new physician said I will need to be seen every three months.

I’m a little disappointed with my previous provider because MGUS was diagnosed, but essentially it wasn’t being treated/monitored.

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@kmmungin

Just diagnosed and I must admit I'm concerned. Since there's no cure or treatment, waiting to see if it progresses is very unsettling.

Jump to this post

I was recently (November 2022) diagnosed with MGUS - routine blood work from primary care - Quest Lab suggested on report that additional tests be run.

Was already an existing patient at MD Anderson - Houston. Was able to get appt. with Dr. Saini in Myeloma dept. He ran lots of blood work and confirmed I have IgG MGUS.

Will have follow up bloodwork done every 3 months. Next appt. at MDA is
February 9th, 2023

What is your plan going forward ?

Jackie in Hill County, Texas

REPLY

Just diagnosed and I must admit I'm concerned. Since there's no cure or treatment, waiting to see if it progresses is very unsettling.

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@tallyteresa

You bill yourself as an overachiever and I refer to myself as "special" for my 2 primary cancers in 18 months plus the precancers, lol. Seriously though, sorry to hear about the dialysis as I'm told it's tough. How many days per week for you? And also, thank you
so much for being our Volunteer Mentor.

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@tallyteresa I say i am an overachiever, in that I couldn't be content with one health issues, I had to have more! And, my siblings are pretty darned healthy, so I guess I was just volunteering to take on health concerns! As for my dialysis, I do it every day, via peritoneal dialysis catheter.

Being a Volunteer Mentor for Mayo Connect is an honor for me, and there is great pleasure in helping others on their journeys.
Ginger

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@gingerw

@tallyteresa My MGUS/myeloma journey started when a new nephrologist recognized concerning blood results. Apparently, they had been there for a while, but a previous kidney doctor [associated with an HMO] had glossed over them. When I switched to an out of network dr, she encouraged me to look further into the issues. Hence, a trip to a hematologist/oncologist, where I was diagnosed with the MGUS in Nov 2017. Nov 2018 it had advanced to SMM [smoldering multiple myeloma], which was highly unusual as most MGUS patients go for many years without any change. Nov 2019 my system advanced to multiple myeloma, and I am active treatment for that since August 2021. Guess I just had to charge ahead! I am also a kidney disease patient since 2005, now on dialysis, but that is a result of a rare autoimmune disease, not anything related to MGUS. My treatment plan for both conditions are intertwined, and those two specialists are in good communication with each other to coordinate, thank goodness!

Each day I do the best I can, given my energy levels and motivation. When I describe myself as an "overachiever", it's because there have been several autoimmune conditions diagnosed, plus 3 different cancers. I have been told I am not the normal patient, having a unusual combination of issues, that require creative treatment options. I tell my medical team I am a guinea pig for their future patients with challenging combinations, and that's okay. Being part of research is a great way to look at it, on those days when it seems darker than the day before.
Ginger

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You bill yourself as an overachiever and I refer to myself as "special" for my 2 primary cancers in 18 months plus the precancers, lol. Seriously though, sorry to hear about the dialysis as I'm told it's tough. How many days per week for you? And also, thank you
so much for being our Volunteer Mentor.

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