1. < Blood Cancers & Disorders

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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Mentor
Patty, Volunteer Mentor | @pmm | 2 days ago
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@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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@dondi2101
Hi Dianna!
All good questions. The chance of progression to MM or SMM is low, so while I don’t worry a lot about it (diagnosed in 2020) much of the reason I don’t worry is that I get medical care from an established Cancer treatment organization with a great reputation. It’s really important to find a treatment provider who treats Multiple Myeloma. You don’t have MM, and we hope you never will, but you want someone who treats patients within the spectrum every day. Think of getting a colonoscopy. You’d want somebody that does two or three a day rather than somebody who does two or three a year, right?
So my first question is why your clinician is sending out your labs? Mayo is the gold standard, so while they do a great job, I wonder why your provider isn’t equipped to process and review those lab results? You definitely need information and to get your questions answered.
Some of our members who live in rural areas have to travel to get a good diagnostic and follow up work up. It’s a pain, but it’s reassuring to get all your questions answered.
Another advantage of being seen in a large, well-established setting is that you have the availability of Ancillary services. Whenever I start a new medication, I always ask for a pharmacy consult so that they can look at any combination of the medication that I’m already taking with the new medication. This includes any over-the-counter supplements that I take. It’s been quite helpful to get their considered opinion. There are many medications that have the potential to impact kidney or liver function. You definitely want your physician to be on top of that and along with your MGUS testing. If there is a pharmacist connected to the hematology/oncology provider, then they are well-versed in this.
I also receive periodic scans to make sure that there are no bone lesions because that indicates progression.
I always feel sad when people can’t get the information that they need from their treatment provider. When you see someone once a year and you get lab results, which are not explained to you that is insufficient and unacceptable. Can you call your provider and ask for a telephone call return or, a telemedicine appointment?
I did a quick search and I did find this about certain medications and multiple myeloma. Nothing specific to MGUS.
https://www.mymyelomateam.com/resources/can-certain-medications-raise-the-risk-for-developing-myeloma
Do you mind sharing a little more about your provider situation? Are you close to a teaching hospital? Cancer treatment center?
I’m really glad you found this group because I always learn from our experienced members I hope there will be an information that is useful to you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@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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@dondi2101, I'm bringing @pmm into this discussion too.

Getting results from a different lab may result in variations of testing. It sounds like the Mayo lab results were very thorough. What did your doctor say about the test results? When will you have the next round of lab work done for comparison?

REPLY
anneschanck | @anneschanck | Nov 12 2:31pm
In reply to @sheryl71 "OH WOW!!!! Congrads I went to see my hematology my levels just go up high but..." + (show)
@sheryl71

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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I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats, prolia and so on. I take this medis since 30 years, then it gets better and after not taking medis it’s bad again. Infeel sick, but nobody is so terribly interested. I would like to do no more anything a live as long as i live!

REPLY
cdeldeo | @cdeldeo | Nov 12 9:52am
In reply to @dondi2101 "I was diagnosed with MGUS fall 2015. This was accidentally found in a blood test when..." + (show)
@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??

REPLY
dondi2101 | @dondi2101 | Nov 11 10:17am
In reply to @clcsmith "You are young for the diagnosis. I was 55 when diagnosed with IgA. I am being..." + (show)
@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.

Jump to this post

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

REPLY
3 replies
8positive | @8positive | Nov 10 8:45am
In reply to @sussu "My MGUS founded over 12 years ago. I'm 54 years old now. They haven't got any..." + (show)
@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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kayabbott | @kayabbott | Nov 10 7:56am
In reply to @anneschanck "MGUS Gammapathie monoclonale Beta 1 5.5 Beta 2 7.6 The other parameters are more or less..." + (show)
@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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richardab | @richardab | Nov 10 5:23am

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.

REPLY
anneschanck | @anneschanck | Nov 9 2:34pm
In reply to @kayabbott "I am 70 and my MGUS started 8 years ago. There is a lot of research..." + (show)
@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.

Jump to this post

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

REPLY
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