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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

kayabbott | @kayabbott | Jan 3 7:33am

I was diagnosed with Kappa light chain MGUS in 2016. M proteins showed up last year but are at baseline. Only symptom I have is some polyneuropathy, but that could be from celiac (2009) as well. My Kappa/Lamba ratios have been ramping up for years (5.9 [normal is 0.26-1.65[) but still at 1% risk of progressing. I've kept a food log since 2009 so don't eat anything that causes GI problems, a mostly FODMAP diet with lots of tumeric/black pepper (tumeric may or may not suppress the deranged plasma cells) and almost no processed foods. I'm 69 and also exercise a lot and keep my weight down. I met my new oncologist after seeing Barbie, so his resemblance to Ken may have been colored by that; he is quite perky. Humor is good medicine.

j2c | @j2c | Jan 2 11:37pm

I was diagnosed with MGUS, in 2015, I believe, when a Dr. was checking why I was having numbness and tingling in both feet and discovered a strange protein in my blood and referred me to a blood Dr., and have appointments every 6 months with blood tests and every 12 months with urine tests. My feet continue to get more numb at times and less numb at times and sleep time it's not as bad but the longer I sit or stand it works it's way up my ankles. I use to be very active walking and hiking but now in the later 60s, that doesn't happen too often and really slows down my activity. I worked in mining for 40+ years and retired, but is anyone find anything that truly helps. The Drs., say no cure, just monitor. Any ideas?

ravenh | @ravenh | Jan 2 7:13pm

Yes I have it. Was diagnosed close to a yr ago.

kbluegrass | @kbluegrass | Jan 2 5:17am

OK, well it sounds like you've been aware and working to keep your numbers in control for a long time and are doing a good job at that. (I think I saw you mentioned 10 years somewhere).

I don't have a sense for how these numbers move yet, and haven't had my first bone marrow biopsy (can't say I'm looking forward to it either but maybe not so bad). I hope your numbers are headed in the right direction in your next set of results - good luck!

Is the M-spike number itself less relevant to your issue? I had mine done by two different labs, and the first was 1.9 g/dl, then 2 months later 1.67 g/dl, which seems to be in the high risk category either way.

Once again, thanks and good luck!

mascot | @mascot | Jan 2 2:39am

In reply to @kbluegrass "Hi, Free Lambda Chains 53.8 mg/L Free Kappa Chains 9.4 mg/L Ratio .18 What changed your..." + (show)

A lot more(250) lambda, 20%in bone marrow and the checkup is next week so will find out more then!
Mascot

kbluegrass | @kbluegrass | Jan 2 1:30am

In reply to @mascot "Hi bluegrass, Welcome and keep a sane head! Please. How high is your lambda ? Your..." + (show)

Hi,

Free Lambda Chains 53.8 mg/L
Free Kappa Chains 9.4 mg/L
Ratio .18

What changed your categorization to smouldering? What is your m-spike? Have you seen much progression over time?

mascot | @mascot | Dec 22, 2023

In reply to @kbluegrass "Thank you Patty! I appreciate the reply and suggestions! I am getting a glucose monitor as..." + (show)

Hi bluegrass,
Welcome and keep a sane head! Please.
How high is your lambda ? Your metformin intake is ok with your doc? I am smouldering igg lambda too.quotient k/l is 0,05
Best regards
Mascot

kbluegrass | @kbluegrass | Dec 21, 2023

Haha... me too.

Patty, Volunteer Mentor | @pmm | Dec 21, 2023

In reply to @kbluegrass "Thank you Patty! I appreciate the reply and suggestions! I am getting a glucose monitor as..." + (show)

Amazing, @kbluegrass! I am still working on English as my first language. Good luck with the new doc! And el español!
Patty

kbluegrass | @kbluegrass | Dec 21, 2023

In reply to @pmm "Hi @kbluegrass, you are taking the bull by the horns here. I think we all could..." + (show)

@pmm

Hi @kbluegrass, you are taking the bull by the horns here. I think we all could feel better and have better outcomes if we ate healthier and exercised. There is a lot of information about the benefits and efficacy of nutritional supplements. If you are taking Turmeric or curcumin, they say it might reduce blood glucose and increase the risk of hypoglycaemia, especially if you are also taking Metformin. Maybe something to watch out for. I have read about that because of my type 2 Diabetes. Maybe it wouldn’t be a concern for you.
It’s so hard to process all of the information you read (Dr Google) as some of it is contradictory, and there is some just plain bad information floating around. I’m sure my hem/onc doc has met the sainthood criteria as I have lists of written questions when I see him. He’s very patient with me. I’m three years into my MGUS diagnosis and am now seen every six months, having been seen every three months for the first two years. My “numbers” have been very stable which is a good thing.
The hardest part for me after they started throwing words like “multiple myeloma, smoldering” and “Monoclonal gammopathy of undetermined significance” around was keeping my head from exploding with raw anxiety. Thankfully, the risk of progression is low.
Everyone who participates in this forum has a unique medical profile, some with comorbidities and nobody’s situation is exactly the same. Anxiety is common among us when this is new to us. It gets easier.
I hope you have found an experienced and thorough clinician to work with. It’s important to have confidence in that relationship and be able to ask questions and discuss strategies until the two of you have a plan. If not, keep looking.
I love your positivity and see that you are very proactive. Let us know how your bone biopsy turns out. Wishing you the best possible outcome.
Patty

Jump to this post

Thank you Patty! I appreciate the reply and suggestions!

I am getting a glucose monitor as well, which is new to me, but hopefully that will help me track hypoglycemia. Thus far I have felt less tired and more crisp, but I'm glad you mention it as I didn't really consider it getting too low.

I am an American living in Spain, so thus far I'm just trying to understand the new vocabulary my doctor mentions. Yes, Monoclonal Gammopathy = Monoclonal Gammopothia in Spanish, but when you're told you have that in Spanish, you are wondering what you have just heard. I'll have to determine in time whether we have a good relationship. The positive thing is that healthcare here is so affordable and I can use both a public and private set of doctors in parallel. I meet my public one today for the first time.

I'm glad you are low risk to progression, and it's promising to hear that you've held your numbers stable. I think I am unfortunately high risk, given a >1.5 M-Spike, my IgA and IgM are declining while my IgG is high (Immunoparesis), and I have abnormal free light chain ratio (Lambda) of .18, so I think I'm the Triple Threat! But I also feel very positive that I can make my life healthier and really slow the progression, and that should I get MM it does seem they have some promising therapies coming along with Car-T cell therapies etc.

Thanks again for your feedback and advice!

View More View Less

Please sign in or register to post a reply.