Does anyone else have MGUS?

I have blood taken and see her in June. I think she’s a good doctor and specializes in MM. I tried to get into Mayo but they rejected me saying I had a good doctor. Are you still n MGUS?

@amyboylan1 @ladyesheryl

I found this helpful.
https://www.myeloma.org/what-are-mgus-smm-mm
After reading it, I realized that I needed to ask more questions next time I saw my hem/onc doc. I made a list and took it with me. I think I actually saw him wince when he looked up and saw me holding my notebook. Ha! But to his credit he sat down and answered all of my questions.
If your physician is not taking time with you to fully explain what's happening in your body, you need to get a second opinion and basically interview that doctor to see if it's a better fit. Run your questions by him or her.
Don't feel bad about having lots of questions. I freaked out when I was first diagnosed but three years out I'm feeling pretty confident that I have as good a handle on this as I need to have.
When do you see your hem/onc doctor next?

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,

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

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.

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.

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.

@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

@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.

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.