Does anyone else have MGUS?

@dazlin, for the MGUS labs, were they using serum electrophoresis with immunofixation (SPEP/IFE), 24-hour urine electrophoresis with immununofixation (UPEP/IFE) and serum free light chains (SFLC)? Those three tests are the standard first pass at diagnosing MGUS.

If they did those and you want to share the values or message me personally (can we do that here?), I'm happy to share what I've learned. Of course I can't give medical opinions, but I can share links to articles that are relevant. For instance, there are "stratification" tables published online that list lab values for various levels of risk of progression to MM.

@nancyworld , just got some results from my primary dr...
Albumin. And alpha 1 high,
Beta absolute is low.
I've researched, and says some inflammation, or cancer...maybe liver. Just took labs this morning, so I haven't heard from Dr yet.

Hi @fayeraye. Thank you for responding. I have a hematologist/oncologist, but I have a few concerns with her so am looking for someone else in the DC metro area, preferably northern Virginia.

Here are some of my latest results. Mayo doctors still have me at MGUS stage and progression slotted at 1% per year. They say I’m low risk and have me to continue labs every 6 months. I do take 6000mg of Curcumin with Omega 3 every day.

I believe I will be diagnosed with MGUS shortly, but I think they're ruling out MM. Stats: Male, age 50.
Monoclonal igG Lambda. M-Spike = 1.9 g/dl (Sept 2023) but then 1.67 g/dl (Nov 2023) (This decline confused me but maybe natural fluctuation???). Kappa/Lamda ratio = .18, Beta-2 Microglubulin 2.4 mg/L. IgG = 2382 mg/dl, IgM = 29, IgA= 47. From my reading this puts me at HIGH risk MGUS.

The positives are no issue in 24 hr urine test, no sign of MM in MRI. Pending a bone biopsy.

Having never heard of this 2 months ago, to now, I have decided to just do everything similar to various studies: 1) Metformin 1G daily, 2) Glucose management, so I've just cut diet to fish/veggies/med diet... I wasn't overweight per se, but losing what excess I had. 3) Curcumin x 2 and Omega 3 every day. 4) 14-16 hour intermittent fasting daily. 5) Various other things, Sauna/Ice bath. 6) Fitness/Exercise.

I don't have any idea what my pattern is yet, but if the MM doesn't get me, I suppose I'm going to be in much better shape for everything else!

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

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!

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!