Is there anything to help stop or slow progression of MGUS?
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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@1oldsoul @loribmt has given you some great information already, as have others.
To address your thoughts about a second opinion. You are certainly within your rights if that is a direction you want to pursue! A caveat here is to check with your insurance company to determine they will cover a second opinion! Hopefully your oncologist does not have an attitude about a patient wanting to be sure and feel comfortable about the way their case is handled. Knowledge is power, and helps you make the best joint decision about your health.
Ginger
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2 ReactionsChatGPT is not totally accurate to rely upon as it just reads everything with no prioritization however the suggestions aren’t harmful. Plant based anti inflammatory diet organic (less pesticides) is key. It has helped my k/L ratio. I also wear a mask and gloves if around crowds to lessen infection risk. People may look at me funny but they don’t care for me if I get a fever!
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1 ReactionThe lower your glucose and if you can avoid glucose "spikes" by eating right, it will help greatly as far as inflammation in your body!
I like your overall plan and think I'll adopt it. I already take many of the same supplements as you and today started adding the Turmeric/Curcumin C3. Had to stop taking the Pradaxa. Also ordered the Alpha Lipoic Acid, and PEA. Should arrive tomorrow.
I've been fermenting garlic in honey and taking a clove or two each morning for about a year now.
Been using a Stelo CGM about a month. They are available without a prescription. It helps with managing blood sugar levels. My A1c is lower now than it has been in years. I'm going on the theory that a lower sugar will help.
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1 ReactionHere are some links regarding further testing. I had
a baseline bone marrow biopsy (BMB) 8 years ago when first diagnosed (I wanted to know my starting point). Normal marrow has around 2-3% plasma cells and that showed 5%. I had a BMB this summer because my kappa is now 300 and my kappa/lambda is 29. It showed +15% plasma cells, which should be in the SMM range but my oncologist said still MGUS due to other test results. The genetic test showed 1q21 gain, a genetic mutation that ~40% of MM patients have and that impacts treatment (good [?] to know upfront even if I don't get MM). I like knowing my status, even if the news isn't all that good. I have IgA kappa MGUS.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7203099/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3319353/https://pmc.ncbi.nlm.nih.gov/articles/PMC9425303/
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3 ReactionsDon't assume I have any medical knowledge about MGUS or anything else. I don't even fully trust AI to fully get it right. But here is how ChatGPT responded to your question.......
### **1. LFH (Likely Typo)**
There isn't a standard medical acronym **LFH** related to MGUS or oncology. Did you mean **LDH** (Lactate Dehydrogenase)?
If **LFH** stands for something specific, please clarify, and I'll help further.
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### **2. NIR (Near-Infrared Spectroscopy)**
**NIR** typically refers to **Near-Infrared Spectroscopy**, a non-invasive imaging technology that uses near-infrared light to analyze tissues.
- **Medical Use:** Primarily in brain monitoring, muscle oxygenation, and some cancer diagnostics.
- **Not directly related** to MGUS but may be used in advanced research or diagnostic imaging.
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### **3. IMiDs (Immunomodulatory Drugs)**
**IMiDs** are a class of drugs that **modulate the immune system** and are used in treating conditions like **multiple myeloma**. They work by:
- **Inhibiting tumor growth**
- **Enhancing the immune response** against abnormal cells
- **Suppressing inflammatory cytokines**
**Common IMiDs include:**
1. **Thalidomide** (first-generation IMiD)
2. **Lenalidomide** (Revlimid)
3. **Pomalidomide** (Pomalyst)
**Use in MGUS:**
- **Not typically used for MGUS** because treatment is usually not needed unless progression occurs.
- IMiDs are prescribed for **smoldering multiple myeloma** or **active multiple myeloma**.
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### **Clarification Needed:**
If **LFH** or **NIR** had different meanings in your context, feel free to share more, and I'll adjust the explanation!
Thank you for this! ChatGPT is awesome. The info is horrifying to say the least even though doctors tell you “no worries”. I am going to insist on WBLDCT if my hematologist insists the scans are necessary after my BMB (bone marrow biopsy) Thank you so much for your time and thoughtfulness. God bless you and my prayers are with you through your journey. I look forward to one of us sharing some positive feedback in the near future!
We were neighbors then! I lived in San Marcos and lastly, Fallbrook before I moved to Arkansas. I worked at the Fallbrook hospital in purchasing. My machine is also low level 660 nm and 850 nm but based off my results with plantar fasciitis, I know it has to help other areas. Hope you read the post by @circawdm. He’s had some impressive results and it has really given me hope!
Good morning. I would like to ask you a couple of questions about your diet and supplements. What percentage on average is meat to plant based per day and do you limit meat to once per day? I have seen many variations of the Mediterranean diet. What about grass fed pork, wild venison and eggs? I could go completely vegan today but my digestive system does not handle beans and legumes well so I am going to have to transition slowly to make sure I get enough complete protein in my diet. Also can you tell us how much turmeric/curcumin you take per day? Lots of clinical trials on its efficacy for slowing progression of MGUS but I don’t remember reading about the dosages. Turmeric does wonders for me for back pain- less so with curcumin. My back pain predates MGUS- caused by scoliosis and now some degenerative disc disease. A combination of turmeric, curcumin and walking every day almost completely keeps my pain at bay unless I do too much heavy lifting or bending over with yardwork like raking, weedeating etc. And finally, do you take the R or S-Lipoic acid? I have read many reports that R is better assimilated and recently found out by contacting Doctors Best (the brand I have been taking) that it is 50/50 R and S although they told me they do make one with just R-Lipoic. With that being said, even with 50/50 it gives me a ton of energy. Thanks for taking the time to share your expertise because your results speak for themselves and I know there are so many on this forum who are desperate to do something other than watch and wait.
Could you tell me what LFH
NIR. And IMIDS are. Thank you so much for all the information you provided. I am so scared of progression to full blown MM.