Does anyone else have MGUS?

@dcuste
I think there's a lot of interest in this. Leslie and I were just discussing it so I won't be repetitious, but I would add that I think given what some of the others are taking, my curcumin dose is fairly modest. I've had two rounds of blood analysis since I started. I hope the numbers continue to go down. If I plateau I might consider upping the dosage if my docs are on board.
I have another round of bloodwork and scans in May and we'll see how it goes.

I have been taking 1-2 grams lately. Doesn’t seem to have any downsides so I am going to keep taking that amount. My doctor kind of shrugged too.
I have read those studies too which are promising but not conclusive. And some people seem to respond more than others. Time will tell.

FWIW, I agree with Patty: curcumin may be of some help, but there is insufficient data to say so with any degree of confidence. Unlikely to be harmful in the dosage to which Patty refers (but always check with your doctor first anyway). For the complete story, perhaps presented with more optimism than the current data warrants:
https://www.cancer.gov/about-cancer/treatment/cam/hp/curcumin-pdq#

If your M spike is at 3 and you have neuropathy, you need to see a myeloma specialist at a center that sees a high volume of patients.
I have had MGUS since 2002. The M spike has varied from 1.1 to 1.7 and back down again. I think my hydration at the point of the blood draw may be responsible for the variation.
I also had a fractured hip that was replaced in January 2021. Surgery was done under regional anesthetic not general anesthesia. My free light chains went up and then came back down again. The M spike did not change. However, when I had a reverse shoulder replacement surgery in 2023 under a half hour of general anesthesia, my free light chains soared. They have decreased but not to the level they were before I had the surgery. I do not understand why as I had no problems with the surgery and feel great now.
My previous (now retired) hematologist wanted my bloods drawn every three months. The current one in the same practice thinks yearly is fine -- and every six months if I choose. I do choose every six months.

Hello.. I am brand new to MGUS... November... I am just making my six month appointment for April..What number should I look for to determine my progression? I have had no surgeries, take no meds. ( save one dose of Fosamax for osteoporosis (actually the generic Alendronate)- no fractures yet) I have been blessed with excellent health for 76 years and this is throwing me a curve. I am experiencing some Peripheral neuropathy in hands and feet which is wrecking havoc with my usual walking and exercising. (dizziness. ) In input from anyone with MGUS is welcome. I am anxious, scared and generally discombobulated. Thank you

@hsminc
how curious about the impact of general anesthesia! I'm going to have hip replacement on my right hip April 1. (it is not lost on me that this is April Fools' Day)
This will be my first surgery under general anesthesia since my MGUS diagnosis. I will see how that goes as I definitely want general anesthesia.
It's so curious that you had this reaction. I wonder if anyone can connect those dots as to why? What does your hematologist/oncologist say?

@4kleo
Welcome to the Mayo Clinic Connect blood disorders group. I was diagnosed, like most are, with MGUS "incidentally" when they were looking at something else. I am 3 1/2 years post-diagnosis. Just being referred to a hematologist/oncologist is enough to take the wind out of your sails for sure.
I think that your question is one that we all have asked in one form or another on our MGUS journey. I think it's a very good question to ask your hematologist/oncologist. The reason I say this is that we are all so different. Some have coexisting conditions that complicate our journey. Overall health is something that your doctor will look at and determine what the benchmarks might be. Do you have symptoms? Although MGUS is typically symptom-free, many of us do suffer from peripheral neuropathy. So the strategy for dealing with your MGUS will be different for you than it is for me or anybody else on this forum.
I'm so glad you found us. Many of our MGUS members have had this blood disorder for decades, even multiple decades. Although I was very anxious initially, I am much less so now and live my life without worrying too much about my MGUS.
I have a few suggestions. Stay out of Dr. Google because a lot of the information is outdated. There have been many gains in the treatment of multiple myeloma and blood disorders in general over the last decade.
If you haven't already, find the right doctor. You want someone who treats blood disorder patients every day and you want one who will answer all your questions. write them down and take them with you when you go for your appointments. Hopefully, you have someone who can go with you to appointments to take notes and listen carefully to what your doctor has to say as if you're like I am, there's so much information that comes so fast it's difficult to absorb it all.
The typical strategy with MGUS is watchful waiting. That's a bit maddening for people who like to take the bull by the horns, and there are things you could do to maximize your overall health. Ask to be referred to a neurologist who might be able to prescribe some medication for your neuropathy. Exercise, even with accommodation for those things that you can no longer do with comfort. Eat healthy and most importantly, live your life fully every day. Don't let this define you.
When do you go back to your doctor again and do you believe that you found the right fit for you?

My hematologist expressed concern that my MGUS could be morphing into smoldering myeloma. I went back in my records to 2015 when I had two total knee replacement surgeries. My free light chains increased after each of these surgeries but decreased after a period of time. I had regional anesthetic for both of these surgeries.
My hip replacement was done in 2021. My femur head had broken off and I was a mess. I could not walk 20 feet without screaming. This was Covid time and hip replacements were considered elective surgeries. I finally got scheduled and surgery was a miracle. Again I had regional anesthetic. The pain was gone and I could walk fine without a walker three days later. Interestingly, my free light chains (lambda) )escalated by 100 percent. Following the surgery, the free light chains decreased to almost baseline.
My main concern with general anesthesia is the Mayo research that indicates an effect on cognition in “elderly” people.
One Mayo study indicated uncertainty whether it was inflammation caused by surgery or general anesthesia. This same study did not know whether regional anesthesia could have the same effect.
I have had six major surgeries in my lifetime starting with a Caesarean section in 1966. The hip surgery was definitely tbe easiest. I did not need pain meds after although I took a couple of tylenol because it was prescribed - - typical pain meds like tramadol and hydrocodone were also prescribed but they were not needed.

I was diagnosed with MGUSand CMT (Charcot-Marie-Tooth Disease), which is a rare peripheral neuropathy in 2022 by my neurologist at Mayo and then it went to Biclonal gammopathy. My neurologist had been monitoring my BGUS and I had kept asking about going to a hemotology oncologist. My general practitioner, at a wellness check, was adamant that I see a hemo/onco. I approached my neuro doctor. He talked with one of the MGUS hemo/onco at Mayo and he said that since I was low risk to go back to my GP and either have them monitor until an event happened that would warrant me seeing a hemo/onco or find one on my own. After reviewing this with my GP, she has sent in a referral for a hemo/onco. I am now waiting on a call from them. I was disappointed that I couldn't stay with Mayo concerning this matter, but you keep on striving to advocate for yourself and trust in God's guidance. This is not something that I dwell on, just want to be monitored. Each day is a gift. I really appreciate this forum and those who participate.

@hsminc
The body's reaction to trauma is certainly interesting. And any surgery is certainly traumatic. I have pain when I walk that keeps me from consistently exercising. It's really hard to know what is best and what will have the least amount of negative impact. My first hip surgery was 2016 and it was such a relief. I'm going to forge ahead and hope for the best. I'm so glad yours was successful.