1. < Blood Cancers & Disorders

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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fayeraye | @fayeraye | Sep 16, 2023
In reply to @naiviv "My husband was diagnosed with MGUS not long ago. He went to a cardiologist in Jacksonville..." + (show)
@naiviv

My husband was diagnosed with MGUS not long ago. He went to a cardiologist in Jacksonville Mayo Clinic where he was diagnosed and the dr ordered blood work (Protein electrophoresis in blood and urine) and a special CT Scan. Now after being diagnosed with Cardiac Amyloidosis he is taking a special medication VYNDAMAX to prevent the continuous progression of this condition. He is doing well. He has follow up appointments with Hematologists and the Cardiologist specialized in Amyloidosis.
Yes I recommend that you make appointments with a Hematologist Oncologist. Get well.

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Wow, I’m learning so much from all of you in here. I’m going to definitely see the specialist. I have no idea why my doctor wants to wait. It makes no sense. Thank you so much. I’m very glad your husband is better.

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2 replies
fayeraye | @fayeraye | Sep 16, 2023
In reply to @gingerw "@mguspixi25 My reply to you last night went somewhere, but not onto this forum! Multiple myeloma..." + (show)
@gingerw

@mguspixi25 My reply to you last night went somewhere, but not onto this forum!

Multiple myeloma has many different facets, and there is fortunately a lot of research going on at this time. A side note, I am on chemo for my case. It is my sincere intention to be available to support and assist others however I can, for as long as I can. In other words, be a PITA [insert laughing emoji here]

I will hold all good thoughts for you, that your situation does not morph in to Smoldering Multiple Myeloma.
Ginger

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Thank you for replying. I’m sorry you’re going through all this with the chemo. Sending Prayers your way. It’s nice that you are on here and helping others.

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naiviv | @naiviv | Sep 16, 2023

My husband was diagnosed with MGUS not long ago. He went to a cardiologist in Jacksonville Mayo Clinic where he was diagnosed and the dr ordered blood work (Protein electrophoresis in blood and urine) and a special CT Scan. Now after being diagnosed with Cardiac Amyloidosis he is taking a special medication VYNDAMAX to prevent the continuous progression of this condition. He is doing well. He has follow up appointments with Hematologists and the Cardiologist specialized in Amyloidosis.
Yes I recommend that you make appointments with a Hematologist Oncologist. Get well.

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1 reply
fayeraye | @fayeraye | Sep 16, 2023
In reply to @harley22 "My primary was the doc who sent me to a hematologist oncologist for follow up to..." + (show)
@harley22

My primary was the doc who sent me to a hematologist oncologist for follow up to my MGUS on my lab results.
I am now being followed up every 6 mos with bloodwork there.

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I just don’t understand why my doctor is waiting. Everyone I’ve talk to is saying to go see a specialist.

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harley22 | @harley22 | Sep 16, 2023
In reply to @fayeraye "I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need..." + (show)
@fayeraye

I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need to be re-checked again every 6 months. My question is when should you see a specialist, hematologist/oncologist? Does anyone know? I have no symptoms and they caught this at my regular check up.

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My primary was the doc who sent me to a hematologist oncologist for follow up to my MGUS on my lab results.
I am now being followed up every 6 mos with bloodwork there.

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1 reply
fayeraye | @fayeraye | Sep 16, 2023
In reply to @gingerw "@fayeraye Welcome to Mayo Clinic Connect. It can be scary to hear news like this, and..." + (show)
@gingerw

@fayeraye Welcome to Mayo Clinic Connect. It can be scary to hear news like this, and pretty confusing, too.

My suggestion is to ask your dr for a referral to a hematologist oncologist. You want to have a specialist following you, specifically for the reason they have more interest and information. I would thank your primary for finding this. There is a lot of information out there you can look up to educate yourself.

http://www.myeloma.org is the website for the International Myeloma Foundation

Please don't go down the rabbit hole of Dr. Google! It can be real scary, and possibly lead you to misinformation.
Ginger

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Thank you, I am definitely getting a referral. I feel much more comfortable in having someone that is up to date on this disease.

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1 reply
fayeraye | @fayeraye | Sep 16, 2023
In reply to @loribmt "Hi @fayeraye. First, a little bit about your new diagnosis from Very Well Health, which give..." + (show)
@loribmt

Hi @fayeraye. First, a little bit about your new diagnosis from Very Well Health, which give a great explanation of this condition:
“Monoclonal gammopathy of undetermined significance (MGUS) is a medical condition that has no symptoms. It causes the production of multiple copies of an abnormal protein in your blood.”

Basically, when you had your blood tests at your physical your doctor noticed the presence of an abnormal protein in your blood called the M protein. For many people this doesn’t cause an issue but over time if too much of this M protein collects it can create some problems. But it can take a very long time for this to happen and in some people nothing changes and no treatment is required.

Having routine blood work as your doctor suggested every 6 months is a good way to keep an eye out for any possible progression. For now, it may be fine to stay with your pcp. But if there are any changes in the future you may opt to see a hematologist or hematologist oncologist. They specialize in blood disorders and seeing them would be the next likely step to take. There are different risk types of MGUS which can predict the likelihood of the condition to progress. So for that reason, it would be valuable to be with a specialist.

Here are 2 informational articles on MGUS.
https://www.verywellhealth.com/monoclonal-gammopathy-of-undetermined-significance-4771132
https://www.healthline.com/health/how-serious-is-mgus
I know getting a new diagnosis can cause a great deal of fear and stress especially when it feels so ‘out there’…like, is something going to happen or not!? The proverbial, “waiting for the other shoe to drop”. It doesn’t mean you live in fear from checkup to check up. Live life normally and try to stay away from Dr Google because that can just add anxiety. ☺️

Welcome to Connect! This is such a great community and I think you’ll find you’re not alone here. We have quite a few members with MGUS who will be more than happy to answer any questions you might have. You might enjoy exploring the 70+ other support groups we have in the forum and don’t hesitate to jump into to any conversation where your life experiences and journeys might offer support to someone else.
What types of things bring you joy daily?

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I thank you for all this information you gave me. It’s very helpful. I think I’m going to get a specialist. I feel more comfortable.

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ajbonett | @ajbonett | Sep 16, 2023

I agree that it gives us time to not dwell on the "what ifs." My doctor has told me that when your cancerous cells reach 10% of all your plasma cells, that is when they start treatment. The percentage can remain low for quite some time, but then suddenly spike to higher levels. This is the indicator to start preparing for things to get worse. In the meantime, just keep on doing what you do while keeping an eye on things.

As for Addison's, I haven't told me hematologist yet. I will at our appointment early next month. I was just diagnosed as of this past week, so we haven't made any decisions on treatment yet. It will most likely be a steroid patch, but I have a very "touchy" system, so we will see.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 15, 2023
In reply to @ajbonett "I was told by my doctor that the disease WILL progress in everyone at some point,..." + (show)
@ajbonett

I was told by my doctor that the disease WILL progress in everyone at some point, unless they die of something else before the MGUS progresses to smoldering or MM. He says it could be 15 - 20 years from the first MGUS diagnosis until it progresses, but it will progress. I am relatively young for the MGUS diagnosis, as my doctor told me that most people are diagnosed in their 70's and I am in my 50's. He does my bloodwork every 3 months and my next appointment is about 3 weeks away. I'm curious as to what he will say this time, and I've recently been diagnosed as also having Addison's disease. Just some info...

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@ajbonett MGUS is often found while another health issue is being investigated. If we look at 15 to 20 years before progressing, that leaves me a lot of hope to not dwell on the "what ifs". What has your doctor indicated your treatment will be for the Addison's Disease?
Ginger

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ajbonett | @ajbonett | Sep 15, 2023
In reply to @fayeraye "I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need..." + (show)
@fayeraye

I was just diagnosed with MGUS AS OF Aug 30, 2023. My doctor said I need to be re-checked again every 6 months. My question is when should you see a specialist, hematologist/oncologist? Does anyone know? I have no symptoms and they caught this at my regular check up.

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When they first found my M-spike, I immediately asked a very good local oncologist friend about recommendations for a hematologist. He was very adamant that I should go to one of the major medical centers in our area. He said that the local docs are used to dealing with less rare diseases like leukemia & anemias, but not so much with MGUS/MM. There are many subtleties to understanding how all of the numbers relate to each other and you need someone who can do that.

My biggest issue right now is my ferritin levels. I will get an iron infusion at this next visit. Beyond that, I seem to be asymptomatic.

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