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

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

I am wondering if there is anything anyone is doing to stop or slow the progression of MGUS. I m recently diagnosed and have a lot to learn. My oncologist said there is nothing that can be done. Also could some of you share how long you have had MGUS. I am like I’m sure like all of you very concerned about my MGUS processing. Thank you.

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@terry1976

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

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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.

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@ewcbhc

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.

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.25 mg of pramapexole sorry about that. Auto editor sleeping.

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Could you please write that medication again? Thanks

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@ajbonett

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.

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OH WOW!!!! Congrads I went to see my hematology my levels just go up high but not to high and then low so its up and down. I don't any kinda of medicine for any of the pain I have I have to live with it day to day. I was by my hematology Dr that MGUS doesn't hurt but I don't know I've been hurting for years and I never have any energy tried all the time . So I had my
Physician run test for Lupus so now the blood levels are high for this also MY SED RATE is 43mm/hr its not suppose to go pass 30mm/hr so now off to see Rheumatologist Dr . So now I'm worried about this because it could either be Lupus which I don't have all the systems or it can be autoimmune disease which is scareds me. I will have to try this diet that your applying too what is the diet would like more information

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@kayabbott

I am 70 and my MGUS started 8 years ago. There is a lot of research now on designer proteins that can lock onto the nasty-bits mutated cells in the bone marrow and stop replication, but those are generally just used in late-stage SMM (smoldering multiple myeloma) or MM. They are not used in MGUS due to side effects, and for most people with MGUS, it doesn't progress to SMM or MM. So, the longer one can go with just MGUS the closer to better treatments. ResearchGate has a lot of good peer-reviewed papers on MGUS, SMM, and MM. A lot of the slowing progression is the same with all syndromes and diseases, take care of yourself, exercise, manage stress, and healthy diet. Keep a food journal in case you have any food intolerances that might cause inflammation or other issues. Some people take bioavailable curcumin. Curcumin is in turmeric root and has been found to decrease TNF (tumor necrosis factor) in high doses (higher than just adding turmeric to stuff). Curcumin is poorly absorbed by the GI tract so supplements\ with peperine (from black pepper) or lipids (fats) and eaten with food help. There are a lot of brands, just make sure it is bioavailable rather than just curcumin or turmeric. I take about a gram/day of curcumin but most of the research is on 4-7 gm/day. It can cause side effects for some and does thin the blood a bit, so check with a doctor before ramping up.

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MGUS
Gammapathie monoclonale
Beta 1 5.5
Beta 2 7.6
The other parameters are more or less range!
Thank you for an answer!

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Most MGUS' do not progress any further. Some, of course, do to Smoldering (Asymetric) Myeloma (SM) and an even smaller percent to Multiple Myeloma (MM). Doctors in general rarely recommend treatments for MGUS and SM as the treatment effects and aftereffects would be worse than symptoms people are experiencing. Please be aware that much money and research has and continues to go into studying and developing treatments for MM and the life expectancy continues to increase. Get a good hematologist/oncologist, one who is well versed in the disease and willing to communicate and work with you.

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@anneschanck

MGUS
Gammapathie monoclonale
Beta 1 5.5
Beta 2 7.6
The other parameters are more or less range!
Thank you for an answer!

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MGUS is monoclonal gammopathy of undetermined significance, so I imagine that is your diagnosis. Other parameters mostly in normal range is good. Did the doctor tell you what brand of MGUS you have? Mine is IgA Kappa MGUS (almost sounds like a Greek sorority). I'm not a doctor of medicine. Do your beta numbers refer to microalbumin or some other inflammatory of other marker? It would be good to get an explanation of your bloodwork from your doctor(s). As others have mentioned, MGUS stays as MGUS for most people.

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@sussu

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.

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I’m doing the plant based and in 6 months my IgG kappa came down O.6 better than before constantly going higher however my IgM still is below normal. My Hem-Onc dr told me no chemo until kappa lambda ratio is above 50 since the drugs can cause lymphoma. Is that why aj you were told not to treat yet? If you are symptomatic you might need treatment though the bones might be an indicator do you get alkphos blood test and X-ray of bone? That might help. I do feel the plant based is better.

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@clcsmith

You are young for the diagnosis. I was 55 when diagnosed with IgA. I am being treated for mast cell activation syndrome as well. I am 60 now.

I take pepcid, Allegra, claritin, vitamin d and benadryl everyday. My IgA went down for the first time this year but my lambda light chain went up a bit.

My father-in-law had MGUS which became Multiple Myeloma and was treated 8 years ago and is free of it today at 85.

My brother's mother-in-law was not diagnosed with MGUS so her Multiple myeloma had progressed before diagnosis and she passed away just a year after diagnosis.

It is about early diagnosis and treatment.

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I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when the hematologist was looking for the reason I was having unexplained roving pain - basically all over the body. My rheumatoid factor was quite high but the rheumatoid doctor said I didn't have rheumatoid arthritis after he examined he; thus being referred to a hematologist. Since then, I have annual monoclonal protein study tests sent to the Mayo Clinic in Rochester. This year's test was a bit different from all the past tests. Have they changed the way testing is done. My main question is did you find taking antihistamines and antacids had an affect on MGUS? My IgA was 87 in Oct '24. My IgG Lambda is .385 which is high. I don't see this type test in previous testing.
Diana

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@dondi2101

I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when the hematologist was looking for the reason I was having unexplained roving pain - basically all over the body. My rheumatoid factor was quite high but the rheumatoid doctor said I didn't have rheumatoid arthritis after he examined he; thus being referred to a hematologist. Since then, I have annual monoclonal protein study tests sent to the Mayo Clinic in Rochester. This year's test was a bit different from all the past tests. Have they changed the way testing is done. My main question is did you find taking antihistamines and antacids had an affect on MGUS? My IgA was 87 in Oct '24. My IgG Lambda is .385 which is high. I don't see this type test in previous testing.
Diana

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My IgE was 90000..no one knows why??

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