Diagnosed: MGUS

Thank you so much, I really thought other Doctors were just turfing me off to the Hemo Doctor. Now I know there are other people with PN from MGUS.

I also have peripheral neuropathy from MGUS, worse on my left side, and I don’t know if it has anything to do with hip pain. I have a lot of questions at my next appointment with my hematologist.

I would like (and am going to get) a baseline via bmb as well. Also a whole body CT to evaluate for bone lesions. I saw a cancer specialist who treats MGUS and Myeloma patients who has ordered these for me. I’m more of a need to know type person. I’ve read too much about the effects of MGUS (for some people) to sit without knowing. Maybe afterwards I can comfortably take the sit and wait approach. I don’t think there is a wrong way to decide, each person can make their own informed decision. I do appreciate hearing other people’s experiences on this forum, it helps.

I also was diagnosed with Mgus IgG lamda in June 2023. My IgG is 2500 and IgA is 16. Last year my abnormal protein band increased from 1.6 g/dl to 2.0 and my gamma globulin increased from 1.8 g/dl to 2.1 in January. I also started taking Tumeric in January and when i was tested in April my levels came down slightly. I am scheduled for a bone marrow biopsy on May 6 to get an indication of my plasma levels. I have low rbc and low immune system. I am hopeful that having a baseline can ease the feelings that arise from not knowing.

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.

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.

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.

@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?

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.

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.