Is there anything to help stop or slow progression of MGUS?

I was diagnosed with MGUS about 2 1/2 years ago and have now progressed to Smouldering Myeloma. I joined a medical study out of MSK called a nutrivention study. Basically, they are looking to see if they can stop the progression of MGUS and Smouldering Myeloma through using a whole-foods, plant-based diet. I started the diet at the beginning of August and by the end of the month my M-Spike and light-chain ratio had dropped by more than half. I am now almost 3 months in and will have new labs drawn next week. I can't wait to see if they have dropped even further. I have also had a big drop in my inflammation which has helped my energy levels and lost 23+ lbs as of this morning. I feel like a new person. My husband is doing it with me and his cholesterol has dropped from borderline to perfect levels and he has lost 15 lbs.

Starting the diet wasn't as tough as we thought it would be. It's the elimination of dairy that is the hardest for us. But we have done a lot of research, gathered some fun recipes, and look at it as an adventure. We are learning to cook without oils, and we use mostly mushrooms and beans instead of tofu or "vegan meats." I forgot to mention that I limit my "added sugars" to less than 5 grams per day, and some days have no added sugars. Limiting the sugars is very important because cancer often uses them as "food" to grow.

I will also tell you that while my "study hematologist" and endocrinologist were thrilled with my results in such a short time, my regular hematologist was not. Earlier this week was the first time he saw my study results. He actually seemed a bit annoyed that I was going this route and feeling great. He kept asking if I was hurting anywhere and downplayed my test results even though they were there in black in white. I was very disappointed in him not acknowledging that I was doing better without any medical intervention.

So, to answer the question of both you and the OP... YES! There is something you can do. You will need to set your mind to it, but it is so much better than waiting and doing nothing, and then taking harsh drugs in a battle that you could possibly have avoided. I wish you well whatever you choose to do. Feel free to reach out privately if you want more information.

My peripheral neuropathy exhibits as restless leg syndrome at night. My neurologist prescribed .25 mg before bed and it works for me. He also prescribed Lyrica ( gabapentin ) with mixed results. Life at 84 is not as much fun as I thought it would be, but the alternative is not yet desirable. Every day is a gift.

I have been doing all the reading and research for my spouse, diagnosed in 2019, by his astute PCP, just before Covid and slow to get to see a heme-onc for further eval. 6 months monitoring by blood work. Nothing on imaging in 2019 and it has not been repeated. I could not see heme-onc with him and once he heard cancer his brain did not absorb much of, if any, of the rest of the conversation. Patient education was not offered then or since. He cannot wrap his head around the fact that his will likely never progress. In his head he has cancer.

His primary symptom was peripheral neuropathy and as a very active athletic guy with other health issues, that was for him a last straw moment. He's obstinate about disregarding dietary changes, so I can only encourage--outside my circle of control. The PN in MGUS seems to be paraproteinemia--driven by accumulation of excess proteins (the antibodies) on the myelin sheath of the nerves, as I understand it. Poorly understood in the neurology community at large. The typical pharma--pre-gabalin, gabapentin, lyrica--are poorly tolerated by him and many others, so not worth the brain fog/disorientation/loss of balance, to pursue those
Stay away from B6--check your supplements that you are not exceeding dose--should all be achieved by food choices, not supplements--it is similarly a cause of PN in those who have not had other underlying factors.
He has become more and more sedentary over the intervening years, suffered bouts of gout/inflammation, that I suspect are separate from the MGUS but pile on to his symptoms and thus add to his depression.
Finding new hobbies has been something he's only just started to discuss openly, to move on from his funk. He sees a MH specialist but irregularly. His depression and anxiety can ripple out and make our relationship struggle in real life. So as his support person I have to be certain I am getting MH support. Being open and honest with your real life people is important. I hope you have that kind of ongoing support

My MGUS founded over 12 years ago. I'm 54 years old now. They haven't got any treatment or advices, only blood tests once a year and I can only hope that the results are as bad as every other year. When I was working at the school where were mold (I'm sick from mold since 1980), the IgA get higher. But here in Finland nobody knows anything about MGUS or how I quickly I'll got infected by viruses, COVID or adeno or so. I don't even remember, when I felt myself healthy. I think I have long COVID, but here in Finland they don't even notice that either. So lonely with my problems.

Thank you so much for this. Living in the present is a hard. I am having so much anxiety about this progressing. How long ago did you say your husband was diagnosed with MGUS.

his diet is horrible....he has a massive sweet tooth (possibly pre-diabetic) and snacks on chips and other junk food
doesn't like vegetables, so rarely eats any
probably too much red meat, but no cholesterol problems so he does what he wants, french fries are his preferred side dish
I do most of the cooking so he does eat well-prepared chicken meals 4 or 5 nights a week, but likes pizza and other take out
and he lives on diet pepsi
it makes me crazy
I try to use the Mediterranean diet in preparing our meals, as well as the DASH diet recommentations
I do very few supplements and he does none
they are not regulated by the FDA and the quality parameters concern me;
R-alpha lipoic acid is presumed to be helpful with the PN

as to the "anticipatory" grief upon hearing the word cancer, there are therapists who can help with that and put it in perspective, but it may take some work to find one who is a good fit, to help live in the present

Thank you so much for this share. I can relate to so much you said. I was diagnosed earlier this year. I am a 65 year old female. I can’t get the cancer word outside of my head. I am taking supplements maybe too many. On this site many recommended turmeric with Curcumin which I am taking. Can you tell me about his diet?

I have been doing all the reading and research for my spouse, diagnosed in 2019, by his astute PCP, just before Covid and slow to get to see a heme-onc for further eval. 6 months monitoring by blood work. Nothing on imaging in 2019 and it has not been repeated. I could not see heme-onc with him and once he heard cancer his brain did not absorb much of, if any, of the rest of the conversation. Patient education was not offered then or since. He cannot wrap his head around the fact that his will likely never progress. In his head he has cancer.

His primary symptom was peripheral neuropathy and as a very active athletic guy with other health issues, that was for him a last straw moment. He's obstinate about disregarding dietary changes, so I can only encourage--outside my circle of control. The PN in MGUS seems to be paraproteinemia--driven by accumulation of excess proteins (the antibodies) on the myelin sheath of the nerves, as I understand it. Poorly understood in the neurology community at large. The typical pharma--pre-gabalin, gabapentin, lyrica--are poorly tolerated by him and many others, so not worth the brain fog/disorientation/loss of balance, to pursue those
Stay away from B6--check your supplements that you are not exceeding dose--should all be achieved by food choices, not supplements--it is similarly a cause of PN in those who have not had other underlying factors.
He has become more and more sedentary over the intervening years, suffered bouts of gout/inflammation, that I suspect are separate from the MGUS but pile on to his symptoms and thus add to his depression.
Finding new hobbies has been something he's only just started to discuss openly, to move on from his funk. He sees a MH specialist but irregularly. His depression and anxiety can ripple out and make our relationship struggle in real life. So as his support person I have to be certain I am getting MH support. Being open and honest with your real life people is important. I hope you have that kind of ongoing support