Does anyone else have MGUS?

I do and am amazed by the liaise faire response from MD. NO treatment just annual blood test. Also the Blood results at times do not show the M spike. And then they do. This is going on since 2019. That was first appearance. Then it disappears only to return with a higher M spike two years later. Very frustrating as no one takes this seriously. where to go and what to do?

Can anyone tell me why I have an M spike every two years since 2019. Each time it gets higher . Not yet outlandish. At 3 now. When it is not there I am told I do not have MGUS anymore. Then 6 months later it is back at a higher level. I do not get it. I do have neuropathy but not bad. This all started with a fall and a fractured hip plus replacement last year. Could it be that now that the hip is back to normal it just goes away?

Thanks

I have high-risk MGUS / SMM. I have posted here a couple of times, including details of my own condition. I certainly understand concern/anxiety over the future on the part of anyone with this diagnosis, because I have it too. However, a layperson support forum is simply the wrong place to seek answers to questions such as the significance of a fluctuating M-spike. People here can reassure (as I have) that, for example, a BMB need not be a traumatic experience. But this is a complex condition, the medical understanding of which is incomplete and constantly evolving. Medical questions must go to your physician. If you don't have a hematologist/oncologist, get one. If you already have one and are not satisfied with the treatment/advice/service you're getting, find another. That's the best medical advice available here.

@sunsetchris
I don’t think that it is common for physicians to be dismissive about MGUS. It is considered to be a benign condition with a few if any side effects. It is a precursor condition to more serious blood cancers. Because the rate of progression is so small, it is not something that is treated until there is a threshold of concern that is met, which is a measured response to blood analysis.
Personally, with complete blood analysis and scans on a regular basis, I get better preventative medical care than anyone I know. If there are signs of progression, there will be a measured treatment response which will be appropriate in accordance with the type and level of risk associated with the threat.
I think it’s important to have these discussions with your physician. If you are feeling concerned because you don’t believe that the medical response is aggressive enough, that’s a discussion that is best had with your physician. You can also ask for a second opinion.

@sunsetchris As @pmm Patty mentioned, MGUS usually is asymptomatic, so our doctors take a more laid back approach to it all. The greatest percentage of MGUS patients do not progress further to SMM [smoldering multiple myeloma]. It was explained to me that treating someone right away can create an issue down the line, as the patient is then on a very long road of treatment and it can become a situation of overdoing it.

When you have confidence in your hematologist oncologist, talk with them, discuss your own particular situation and what it means to you.
Ginger

Hi, Colleen:

If you don't mind my asking, what is your K/L ratio? Mine was 1.57 when first diagnosed with MGUS in July of 2021. At the most recent quaeterly testing, this month, it was 2.73. It has fluctuated up and down a bit, but the trend seems to be to inch upwards.

Where are you monitored/treated? If it's not at Mayo, I would request to have the lab testing done at a different lab company.

First of all, I would definitely request to be seen by a Hematologist Oncologist who has significant experience with MGUS and the other conditions that it can develop into (such as Multiple Myeloma, etc.).

Don't freak out [says she who always freaks out -- thatt would be me! 🙂 ]. MGUS does not always develop into MM or other malignancy, but having a doctor who is very experienced in seeing the progression is best because s/he will be able to more quickly and accurately ascertain whether the patient is heading in that direction.

Secondly, I would request for full testing for MM to be conducted at a lab from a different laboratory company. Perhaps the lab of the medical group you go to, or that your doctor is sending you to, could be subpar in quality or different employees at that same lab are reaching different results. Who knows, but I like second opinions.

All the best.

Do you know at what point they treat the ratio? I have one too and was diagnosed in 2024. Thanks for your response.

My hematologist only worries about the ratio and has given me a range it should be in. No mention has been made about when a treatment might be needed,