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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karishmagupta | @karishmagupta | 5 days ago

In reply to @pmm "@karishmagupta We are so glad you joined us in this discussion. Yes please do let us..." + (show)

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

Patty, Volunteer Mentor | @pmm | 5 days ago

In reply to @karishmagupta "Definitely .thanks a ton .I really from core of my heart I appreciate how u just..." + (show)

Well now we’ve met!

karishmagupta | @karishmagupta | 5 days ago

Definitely dear 🙏😘

karishmagupta | @karishmagupta | 3 days ago

In reply to @pmm "@karishmagupta Hello and welcome to Mayo clinics connect forum. I remember when I was diagnosed with..." + (show)

@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.

kayabbott | @kayabbott | 3 days ago

In reply to @karishmagupta "We met the haemotologist and he suggested for further bone marrow test.He said it can be..." + (show)

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.

Patty, Volunteer Mentor | @pmm | 2 days ago

In reply to @karishmagupta "We met the haemotologist and he suggested for further bone marrow test.He said it can be..." + (show)

@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?

Patty, Volunteer Mentor | @pmm | 2 days ago

The reason that I chose not to have a bone biopsy at this time is, I asked my hematologist/oncologist if my blood analysis was at current levels, what difference would it make in my treatment regimen? Would there be active intervention rather than “watch and wait.” He said no, it would not make any difference and we would continue to watch and wait. The bone marrow biopsy gives them diagnostic information which your physician may or may not feel is necessary. It’s worth having a discussion about how the results would change the trajectory of your mother‘s care before she is subjected to that. It is a minimal risk to her health, but I always opt to take the most conservative approach that makes sense to me and to my physician at the time.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6334115/

tracybollinger | @tracybollinger | 2 days ago

I had a mspike missed by my 1st Rhuematology, my 2nd opinion noticed it on the tests the first ran. I have been seeing a hematologist for MGUS and would like to know if I need a bone biopsy…will ask my next visit. I’m in 3rd level testing for Myasthenia Gravis and can suffer from a multitude of symptom's with bone pain mixed in. I am 54yrs old and based on everyone’s history and knowledge…do I need to be concerned with these blood test flags:

Immunoglobulin A is 384mg/dl
Free Kappa Lt Chains S is 27.0mg/dl
Beta Globulin 1.5g/dl
M-Spike 0.3g/dl

Thanks!

karishmagupta | @karishmagupta | 2 days ago

In reply to @pmm "@karishmananda Your mom‘s blood analysis is very similar to mine. I have been diagnosed with MGUS..." + (show)

@pmm

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

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Thank u so much dear..yes our oncologist has asked us to wait and have patience for a while as it's going to be a new year and Christmas week off and he says that there is no urgency kind of thing for right now

dondi2101 | @dondi2101 | 1 day ago

In reply to @kayabbott "MGUS can present in many forms, including arthritis inflammation of joints and neuropathy. Check with you..." + (show)

I was diagnosed with MGUS in 2015 at age 64. Since that time, my numbers have been stable. I will post later what they are. My question has to do with the above posting mentioning arthritis inflammation. I have pain in multi areas of body but not in the joints. More like sore areas in ligaments and muscles and random tissue areas. Pain in back, hip and SI areas. Anyone else experiencing this?

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