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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Profile picture for kayabbott @kayabbott

MGUS is considered asymptomatic and is not a cancerous condition, which is why the "US" stands for unknown significance. That said, there is a 1%/year chance of it progressing to multiple myeloma or other cancer. I'm 70 and have had MGUS for 8 years; I have IgA Kappa light chain MGUS and my Kappa is ~300 and Kappa/Lambda is 29. It is good with MGUS, and life in general, to follow a healthy diet, get enough exercise and sleep, and manage stresses. MGUS doesn't limit me; I can still volunteer, exercise, and have fun. It is hard getting a diagnosis of MGUS, and good that you are doing background research.

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Thanks a ton..these replies truly made my heart feel so lightened up.i just can't explain..I am really thankful to all for giving me their worthy time for hearing me out once

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Profile picture for Colleen Young, Connect Director @colleenyoung

@thencea, sometimes having so much data can make you feel like you're drowning in information overload. I hope you've seen the helpful replies from @pmm @lorkish and others.

What monitoring schedule has your hematologist suggested? How are you feeling about the follow-up?

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But I am so overwhelmed that sometimes world is so huge..i don't any of you but you all atleast bothered up to give me the information .it's just that humanity still prevails .

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Profile picture for Patty, Volunteer Mentor @pmm

I find this helpful. Although remember, MGUS is not multiple myeloma, and is not cancer. But the normal ranges of lab results are helpful as I read my reports. I know if my numbers are stable or if something is inching up that my doctor should take a look at. I add any abnormal lab results to my notes when I see the physician for the first time and every time I see him subsequently.
https://www.myelomacentral.com/livingwithmm/multiple-myeloma-treatment-monitoring/understanding-multiple-myeloma-lab-test-results

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Thanks a ton dear..I hope u have a very healthy and long life ..u stay happy always..I wish you loads nd loads of blessings always reaching you from the core of my heart ❤️

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Profile picture for karishmagupta @karishmagupta

Thanks a ton..these replies truly made my heart feel so lightened up.i just can't explain..I am really thankful to all for giving me their worthy time for hearing me out once

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@karishmagupta
We are so glad you joined us in this discussion. Yes please do let us know how things are going.
Patty

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Profile picture for Patty, Volunteer Mentor @pmm

@karishmagupta
We are so glad you joined us in this discussion. Yes please do let us know how things are going.
Patty

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Definitely .thanks a ton .I really from core of my heart I appreciate how u just come up without even knowing me 🙏

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Profile picture for karishmagupta @karishmagupta

Definitely .thanks a ton .I really from core of my heart I appreciate how u just come up without even knowing me 🙏

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Well now we’ve met!

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Profile picture for Patty, Volunteer Mentor @pmm

@karishmagupta
Hello and welcome to Mayo clinics connect forum. I remember when I was diagnosed with MGUS. I hit the Internet and conferred with “Dr. Google“ and although I got lots of information, it was not somehow reassuring to me that I was going to be OK. MGUS is not cancer. It is what is known as a pre-cancerous condition although many who are diagnosed with MGUS never have progression to blood cancers. The most frequent blood cancer associated with MGUS is multiple myeloma.
There is a paraprotein in the blood with MGUS. I am going to provide some links to information that I hope is helpful to you as a follow up to this conversation.
Your mom will need a referral to a hematologist/oncologist. Choose wisely and by that I mean, try and get in with someone who has treated multiple myeloma many times in the past. Your mom does not have multiple myeloma, but you will want someone who really knows those ropes.
She also needs a physician that will answer all her questions. And you will have lots of questions. I’m sure. It’s always good to go with your mom or have someone else go with your mom to appointments so that you can help with all the information that she will receive at her first few appointments. You and your mom should make a list of all the questions you have and take that list with you when you go for her appointment. I check off all my questions and make little notes so that I can go back to them when later, I wonder what the heck my oncologist said about this or that.
I’m glad that you found this forum because I’ve learned so much from other members who have MGUS. Some have had it for over two decades. Some have symptoms like neuropathy in their feet and hands and others have found some success and stabilizing their numbers using supplements or changing their diet. These are all things best discussed with her oncologist/hematologist.
Unfortunately, MGUS cannot be cured, but symptoms can be managed and your mom will get excellent medical care because they will do bloodwork and scans of her bones on a regular basis. Some of us have no symptoms at all. I have some neuropathy in my feet and that’s my only symptom which may be attributed to MGUS… Maybe not. I also have type two diabetes which is well controlled by medication. The neuropathy may be attributed to that.
I’m sorry that you and your mom are having to worry about this, but I’m very glad that you found us and I hope that you will keep in touch and let us know how your mom is doing. I encourage her to join us as well. Even if you do not receive your care through the Mayo Clinic, they are very concerned about patient education and they provide lots of resources for those of us suffering with chronic illness. It’s really good as reference information.
Try to relax and take good care of yourself as stress and anxiety are not your friends nor your mothers. For people suffering from chronic illness, anxiety can really make them feel sick… Even if it is not related to the disease. Being a loving daughter is also very stressful if you are anxious and worried. Your mom can go on and live her life as she usually does, so enjoy her and encourage her to live her life fully.
Will you let me know how this works out for you? Do you have an appointment yet with a hematologist/oncologist?

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We met the haemotologist and he suggested for further bone marrow test.He said it can be a light chain myeloma.Please explain if any information you have regarding that .My mother's Kappa light chain value was 100 mg/L and Kappa lambda ratio was 4.8.Is it very hazardous condition.Will it be cured.

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Profile picture for karishmagupta @karishmagupta

We met the haemotologist and he suggested for further bone marrow test.He said it can be a light chain myeloma.Please explain if any information you have regarding that .My mother's Kappa light chain value was 100 mg/L and Kappa lambda ratio was 4.8.Is it very hazardous condition.Will it be cured.

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I've had IgA Kappa Light Chain MGUS for 8 years (70 yo) and my Kappa is about 300 mg/L and Kappa/Lambda is 29. It is still MGUS. There is a 1%/year risk of MGUS progressing to multiple myeloma (MM). A bone marrow biopsy will determine the percentage of precancerous (I prefer deranged) plasma cells, DNA mutations, and marrow health in general. MM is not curable, but with various meds it can be managed and progression slowed for many years.

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Profile picture for karishmagupta @karishmagupta

We met the haemotologist and he suggested for further bone marrow test.He said it can be a light chain myeloma.Please explain if any information you have regarding that .My mother's Kappa light chain value was 100 mg/L and Kappa lambda ratio was 4.8.Is it very hazardous condition.Will it be cured.

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@karishmananda
Your mom‘s blood analysis is very similar to mine. I have been diagnosed with MGUS based on my blood analysis. I have opted not to have a bone biopsy unless my numbers increase significantly. MGUS is a condition that is non-cancerous. It is a precursor condition to multiple myeloma and some other blood disorders. I hope never to get any of that.
The chances of progression to a blood cancer are very low. One percent per year I will post some information about it in the comments below.
My Kappa free light chains were inching up and a year ago was at 113.8. I started taking turmeric, which I’ll talk a little more about. It is very poorly digested so I take it in curcumin form. It brought my Kappa free light chain down to 88.8 in 6 months. At least that’s what I attribute it to. I did not change my diet or exercise patterns and introduced the curcumin. I’m going to see my hematologist/oncologist on 2 January so we’ll see what he says. He kind of rolled his eyes when I told him I was going to take it. As an empiricist, he wants more data to support the assertion that turmeric can alter the trajectory. I totally agree, but I’m very happy with the results that I have achieved. I’ll let you know if my numbers continue to go down.
So I would not be alarmed by her blood analysis. MGUS is a “watch and wait“ kind of disorder. She should go in for blood analysis on regular basis to make sure that there is no progression. Otherwise, she should live her life and enjoy every day. If the statistics ring true for her, she may never progress to a blood cancer. She will get very good medical attention because they will watch her carefully and MGUS for most people has no symptoms.
You have choices about a bone biopsy. Many have had them. I personally have not by choice. I am in agreement with my oncologist that we can wait. If there are any signs of progression, then we will do the bone biopsy. I get periodic scans of my whole body to look for bone lesions, which would be a telltale sign that the disease has progressed. So far I’ve had none of that. I was diagnosed three years ago.
I hope this is somewhat reassuring to you. It’s good to do some reading about MGUS and and then you are better prepared to talk to her physician when you have appointments.
I am not a physician so he or she may have different ideas about this, but I’m giving you my perspective as a patient.
Try to stay calm in your heart amid the chaos of a new diagnosis.

What did your hematologist/oncologist say the next steps would be?

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