Does anyone else have MGUS?

There are 2 issues I would comment on.
First the testing for progression. Several comments have been made that I agree with. However, there are other modalities that have not been mentioned. If you are thinking of getting a 2nd opinion re testing, I would rec a high level cancer center like Mayos that would have access to all testing pertinent for MUGUS.
The second issue has to do with treatment. Again, I would agree with the comments that have been made re treatment. Certainly, you would not want potentially toxic treatment for a nonmalignant condition. On the other hand, there have been homeopathic treatments that have slowed the progression of MUGUS without any toxicity. An example is curcmin. If you are considering one of these, it would be important to discuss it with your oncologist.

my numbers were starting to go up and I experimented with curcumin/turmeric. I checked with all the right people before I did it to make sure that I wasn't taking any medication's that would not mix and I talked to my oncologist. He sort of rolled his eyes but said he did not object to me trying it. So the last year since I've been taking this supplement my numbers are back to where they started three years ago.
Now I'm basically an empiricist, and it takes a lot more than anecdotal information to convince me that this is the sole reason for this improvement. And it doesn't mean that my numbers won't go up again. But it made me feel as though I was doing something in a situation where we practice patience in watchful waiting.
i'm so glad that you found a doctor and whom you have faith. I think that means a lot.

Thanks for contacting me. It really helps to connect with others. I feel pretty isolated with this.

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.