Diagnosed: MGUS

Having MGUS is difficult disease. It’s usually found by accident. You have no physical symptoms. You get tests results that can be interpreted subjectively. Are confusing and are abnormal. That is the MGUS phase. Then it’s a waiting game. Blood/urine tests every 6-12 months and see what happens. Next phase is Smoldering Myeloma stage. Bone marrows. Genetic testing. Flow cytometery. Plasma cell differentiation. Plus blood tests every 6 months for monitoring progression. Then it’s another waiting game. And this can go on for months ,years or indefinitely for both MGUS and SMM. The not knowing part versus do all you can to make it go away is nerve racking. Most cases nothing ever happens except the worrying. Few cases however do evolve into MM. I have SMM. But am optimistic and hopeful.

@paulita
I hear you. It's not such an easy, linear disease to understand. I look at it a little bit like I look at car repair… there are things I definitely need to know in order to keep the darn thing running, but there are many things that I can just trust that the car dealership knows and if it's broken they'll fix it or at least give me the information I need to know how to keep the darn thing from breaking in the first place.
it's a simplistic analogy to be sure, but there are so many complicating factors such as coexisting conditions and overall health… Age. What was helpful to me was to ask my hem/onc doc, "When you look at my blood analysis numbers, at what point would you be concerned? At what point would you consider treatment?".
I ask lots of questions that I have written down between visits. I'm sure when he sees me walk in with my notebook his eyes involuntarily roll but he is very patient with me and answers all my questions.
I found this link very helpful. There's a lot of information in there and some of it may not be useful to you but you can cherry pick what you read.
https://www.lls.org/sites/default/files/2024-06/FS40_Monoclonal_Gammopathy_MGUS_2024.pdf
Since your diagnosis, have your numbers remained stable?

Thank you, that's a useful link.
My levels have gone up slightly but not enough to be worried about I think. My teriparatide treatment for osteoporosis may be having an effect on the numbers.
I am just beginning to understand that the polyclonal increases have nothing to do with the monoclonal condition (MGUS). Well, I'll ask my haematologist about that at my next appointment with him next month.
The most important thing for me is to manage my anxiety and trust him I guess.

I was diagnosed about 2-3 yrs ago, mainly for anemia. I get blood work and Iron infusions every 3 months. My hematologist is trying to stay ahead of it.

I got my blood results back so everything is going ever so slightly downhill. Lymphocytes and white blood cell count lower, kappa light chain higher, kappa/lambda ratio higher. So a slow creep upwards there. I have two weeks to wait for my appointment with my haematologist. I guess we will continue to watch and wait for 6 months or a year until my next blood tests and appointment. Unless he wants to do a bone marrow extract which I don't particularly want.

I decided to make a list of what I would do if I DID have a diagnosis of MM or Smouldering MM. What do I want to do in my life? Who do I want to see? Who do I NOT want to talk to or share with? Where do I want to go? What are my priorities? It feels nice to do that.

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.

@paulita
On the bone marrow biopsy, I have a slightly different perspective. This is a conversation that one should have with their treatment provider, but I think that it's important to be well informed about any invasive procedure that's either diagnostic or treatment focused, so when I spoke with my hematologist/oncologist about this, I did a deep dive into the literature. It seems that it was once imperative for clinicians to order a blood marrow biopsy with a MGUS diagnosis. I think now they're looking at it as something that they perform for higher risk patients. My numbers have been very stable. This was a 2007 study but there have been other subsequent studies that replicate these conclusions. "Conclusion: There is a linear correlation between serum IgG and IgA immunoglobulin with plasma cell percentage in the bone marrow. Bone marrow biopsy with plasma cell percentage of 10% or higher may be predicted in patients with MGUS with IgG or IGA above 2g/dl and 1.5g/dl respectively. "
So they monitor IgG and IgA immunoglobulin and the data supports that this will align with the plasma cell percentage in your blood plasma.
I tend to be compliant with medical directives but I do ask questions so my question was what will we learn from a bone marrow biopsy that isn't provided in the monitoring of IgG or IGA? The answer is that the diagnosis is more definitive. I think when you have the M protein in your blood it's a pretty definitive diagnosis the question is it MGUS or smoldering multiple myeloma? So then my question was "at what point would you begin to treat MGUS or smoldering multiple myeloma.". He said "oh your numbers are very low," and threw some numbers out there that seemed very far away at the low rate my numbers were rising.
So I haven't done a bone marrow biopsy and I don't intend to unless I get kicked up into a higher risk category.
I think the crucial question for me was to ask at what level of progression would require intervention.
Also, there is interesting research with promising results using turmeric to forestall progression and even lower numbers. I can only give you anecdotal information but there is a lot of information if you Google. My numbers were slowly rising and I read about the success that some of our Connect members are having taking turmeric. it is very poorly absorbed so I take curcumin at 1000 mg twice a day. I am seen every six months and so I have two rounds of blood tests that showed that my numbers were declining slightly. I'm going to see my hematologist/oncologist again in jJuly so I'm hopeful that this trend is going to continue. You might look into that. I did speak to a pharmacist to see if there was any potential interaction between other medications that I'm taking and the curcumin.
Will you let us know what you decide on the blood marrow biopsy?

Dont be overly concerned over slight changes. I go every 3 mths and last blood test showed my M protein and ratio went down a bit. These numbers can vary slightly both ways. Stay positive remember only 1% of MGUS turns into MM annually.

Thanks for the reassurances. There are so many moving parts to this disease. My kidney function tests have increased too. I have no idea how kidneys come into play with MGUS.
I will be prepared for my haematologist appointment. He seems to be leaving it up to me to decide if I want the bone marrow biopsy. I'm happy to postpone it for a year or two or until he says We need to do it. This is a long game I think and I have to get used to waiting.

Hi Paulita, I can suggest that you keep researching all there is to this MGUS disease. It has different effects on each person, my MGUS has given me peripheral neuropathy.