Diagnosed: MGUS

Posted by sandramgus @sandramgus, Jul 29, 2024

Hello everyone, I was diagnosed with MGUS after a routine physical, and my doctor made it sound like it wasn't that serious, but my (favorite) aunt died of multiple myeloma about 20 years ago. So, while I'm glad we caught it early, I have so much to learn. I'm still grieving the death of my mother (from a year ago) and it's a bit much to get this diagnosis after watching her die (she died from ALS.) I'm hoping to find some resources and advice here. Thank you all!

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@amberl99

The idea is to get the insurance before one is diagnosed with anything, ie, when still young. They can’t cancel once the policy is in place altho most premiums go up as one ages. It’s not a charity. They are a money making business as all businesses are. I had a policy at one time but didn’t continue it. That’s ok, no one relies on me for my income and I’d rather have the monthly payments for me.

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I only had life insurance when my kids were young. Once grown and moved out I discontinued it. My wife and I hade money so no need for life insurance. But all insurances always goes up. Regardless if you file no claim. Have no health issues. Have 20 year old junkers for cars. They jack up rates. So not a fan of insurance companies. Oh I know they’re in the business to make money. they also have the power to drop your policy.

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@msh466

Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t revealed they deny your claim. Being truthful you get the same results. I personally do not carry life insurance because, well the first instance you show any symptoms or illness they deny your coverage. It’s fine if you die suddenly but that’s pretty rare. Most of us battle some form of illness for years. Paying your monthly premium means nothing to these companies. It’s about them not you. Kind of heartless I think. I’m sorry. Corporate greed rubs me the wrong way.

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The idea is to get the insurance before one is diagnosed with anything, ie, when still young. They can’t cancel once the policy is in place altho most premiums go up as one ages. It’s not a charity. They are a money making business as all businesses are. I had a policy at one time but didn’t continue it. That’s ok, no one relies on me for my income and I’d rather have the monthly payments for me.

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@msh466

Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t revealed they deny your claim. Being truthful you get the same results. I personally do not carry life insurance because, well the first instance you show any symptoms or illness they deny your coverage. It’s fine if you die suddenly but that’s pretty rare. Most of us battle some form of illness for years. Paying your monthly premium means nothing to these companies. It’s about them not you. Kind of heartless I think. I’m sorry. Corporate greed rubs me the wrong way.

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@msh466
I wholeheartedly agree referencing the corporate grade part.

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This MGUS is insidious disease. So my BM had 15% PC. That is the only indication that I now have SMM. All blood work is still abnormal but stable. M protein below 1. Ration low. IgA sky high but it’s always been that way. So no indication showing progression from MGUS to SMM except thru BM. Also cytology studies. FISH analysis. Chromosome abnormalities are all thru the bone marrow. These are vital for treatment and long range assessments for overall forecast and development of treatment. Getting the jump on this disease is how I may get the upper hand in finding this early.

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@pmm

@msh466 Referencing the who and when to tell....
Although MGUS is not cancer, your MGUS disclosure in life insurance applications is likely to cause denial.
I say this from personal experience. My term life "termed out" and that company denied my application for subsequent coverage based on the MGUS diagnosis.
That was harsh reality.

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Well that is most unfortunate. Kind of damn if you do or don’t. Full disclosure isn’t revealed they deny your claim. Being truthful you get the same results. I personally do not carry life insurance because, well the first instance you show any symptoms or illness they deny your coverage. It’s fine if you die suddenly but that’s pretty rare. Most of us battle some form of illness for years. Paying your monthly premium means nothing to these companies. It’s about them not you. Kind of heartless I think. I’m sorry. Corporate greed rubs me the wrong way.

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@msh466

Bone marrows get to the heart of dealing with MGUS. It’s how the doctors define where the disease state is at. PC proliferation cytology and genetics all come into play. But they need BM for analysis. I have SMM. It’s precancerous and can stay that way forever. Normal life. Stable blood results. Every 6 months. Been that way for over a year. Support is good for those you want to incorporate. Family or friends. Telling co workers is a gray area. What you go thru and how is all different with unlimited tangents spanning the globe. There’s no right or wrong way. But there is your way.

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@msh466 Referencing the who and when to tell....
Although MGUS is not cancer, your MGUS disclosure in life insurance applications is likely to cause denial.
I say this from personal experience. My term life "termed out" and that company denied my application for subsequent coverage based on the MGUS diagnosis.
That was harsh reality.

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I am sorry to hear about your mother. It’s so hard. Could you give details of your numbers. I’d like to see what some others are dealing with. Thank you !!!

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@amberl99

I would like (and am going to get) a baseline via bmb as well. Also a whole body CT to evaluate for bone lesions. I saw a cancer specialist who treats MGUS and Myeloma patients who has ordered these for me. I’m more of a need to know type person. I’ve read too much about the effects of MGUS (for some people) to sit without knowing. Maybe afterwards I can comfortably take the sit and wait approach. I don’t think there is a wrong way to decide, each person can make their own informed decision. I do appreciate hearing other people’s experiences on this forum, it helps.

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I had my BMB on May 7 and the test results are trickling in. My hemo/oncology appointment is on May 21. I am hoping that the results give me a clearer understanding of my prognosis. I switched to a mostly plant based diet when i was diagnosed with MGUS 2 years ago. I just turned 60 and want to live my best life. Yoga and meditation have helped with my my anxiety. Stay strong.

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I have multiple myeloma and have had it for about a year. When my doctor caught it about 3 years ago it was classified as smoldering myeloma. I did 16 weeks of chemo and am now just being monitored with complete blood counts and meeting with my oncologist every three months. Chemotherapy drained my energy big time but now starting to feel better. I’ve had two bone marrow biopsies and was awake for both and can say they weren’t bad at all. My life is pretty good , I stay active with a positive attitude. I have an Aunt that has had MGUS for over 10 years and is doing good, she goes in for a shot every few months. The best part of this cancer is that they are making great progress in its treatment. I also have a great support system with my family. They say mine was probably caused due to agent orange exposure while serving in Vietnam. My VA health care could not be better which I am very grateful for.

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Seeing hematologist in October 2025 with 2nd blood test since diagnosis for Smoldering Multiple Myeloma (6 month visit). No symptoms, thinking about plant-based diet since studies and research trials show slowed platelets. Age 74 in August.

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