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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### **Risk Stratification in MGUS: Low, Intermediate, and High Risk**
MGUS (Monoclonal Gammopathy of Undetermined Significance) is stratified into risk categories to estimate the likelihood of progression to **multiple myeloma (MM)** or related disorders. The risk assessment considers clinical and laboratory factors.
---
### **Key Factors for Risk Stratification:**
1. **M Protein Level (Monoclonal Protein)**
- **Low Risk:** < 1.5 g/dL
- **Intermediate/High Risk:** ≥1.5 g/dL
2. **Type of M Protein:**
- **IgG:** Lower risk compared to IgA or IgM.
- **IgA or IgM:** Higher risk.
3. **Free Light Chain (FLC) Ratio:**
- **Normal Ratio:** 0.26 – 1.65
- **Abnormal Ratio:** Outside this range indicates higher risk.
4. **Bone Marrow Plasma Cell Percentage:**
- **< 5%:** Lower risk.
- **≥5%:** Higher risk.
---
### **Risk Categories:**
#### **1. Low-Risk MGUS:**
- **Criteria:**
- M protein < 1.5 g/dL
- IgG type
- Normal free light chain (FLC) ratio
- **Risk of Progression:**
- **1% per year** (10-15% over 10 years).
- **Monitoring:**
- Blood tests (M protein, FLC) every **6-12 months**.
- Imaging **only if symptoms develop**.
---
#### **2. Intermediate-Risk MGUS:**
- **Criteria:**
- Any **one** of the following:
- M protein ≥1.5 g/dL
- IgA or IgM type
- Abnormal FLC ratio
- **Risk of Progression:**
- **1.5% per year** (15-20% over 10 years).
- **Monitoring:**
- Blood tests every **6 months**.
- Consider imaging (WBLDCT or MRI) **every 1-2 years**.
---
#### **3. High-Risk MGUS:**
- **Criteria:**
- **Two or more** of the following:
- M protein ≥1.5 g/dL
- IgA or IgM type
- Abnormal FLC ratio
- **Risk of Progression:**
- **2-3% per year** (25-30% over 10 years).
- **Monitoring:**
- Blood tests every **3-6 months**.
- Imaging (WBLDCT or MRI) **annually** or sooner if symptoms arise.
---
### **Risk of Progression to Myeloma:**
- **Overall MGUS:** Lifetime risk is approximately **1% per year**.
- **High-risk patients:** Require more frequent monitoring to detect early transformation to **smoldering multiple myeloma (SMM)** or **active myeloma**.
---
### **Next Steps:**
Would you like to discuss your specific risk factors or monitoring plan based on your recent test results?
Let's evaluate your specific risk factors for MGUS progression based on the criteria:
---
### **Your Known Test Results:**
1. **M Protein Levels:**
- **Current:** 1.22 g/dL (November 2024)
- **Trend:** Increasing (from 0.35 g/dL in October 2022)
- **Risk Factor:** Since your M protein is below 1.5 g/dL, this is still in the **low-risk range**, but the upward trend is noteworthy.
2. **Type of M Protein:**
- **Type:** IgM (you mentioned increasing IgM levels)
- **Risk Factor:** IgM MGUS is generally considered **higher risk** than IgG MGUS.
3. **Free Light Chain (FLC) Ratio:**
- **Current Ratio:** 0.8 (down from 1.1)
- **Normal Range:** 0.26 – 1.65
- **Risk Factor:** Your ratio is within the normal range, which is a **low-risk factor**.
4. **Bone Marrow Plasma Cell Percentage:**
- **Status:** Unknown (Have you had a bone marrow biopsy?)
- **Risk Factor:** If < 5%, this would indicate low risk; ≥5% would raise the risk.
---
### **Preliminary Risk Assessment:**
Based on the available information:
- **M Protein Level:** Low-risk threshold but increasing.
- **IgM Type:** Higher risk compared to IgG MGUS.
- **FLC Ratio:** Normal, indicating lower risk.
**Current Assessment:**
You may fall into the **intermediate-risk category**, primarily due to the IgM type and increasing M protein levels. However, additional factors like bone marrow biopsy results and other clinical symptoms are essential for a comprehensive evaluation.
---
### **Recommended Monitoring Plan:**
1. **Blood Tests:**
- **Frequency:** Every **3-6 months**.
- **Tests:**
- **M Protein Level (Serum Protein Electrophoresis - SPEP)**
- **Free Light Chain Assay (FLC)**
- **Complete Blood Count (CBC)** to check for anemia.
- **Creatinine and Calcium Levels** to monitor kidney and bone health.
2. **Imaging:**
- **Baseline Imaging:** If not already done, consider a **WBLDCT** or **MRI** to detect bone lesions.
- **Follow-Up Imaging:** Every **12 months** or sooner if symptoms (like bone pain) develop.
3. **Additional Tests:**
- **Bone Marrow Biopsy:**
- Recommended if M protein continues to rise or new symptoms emerge.
- Helps assess plasma cell percentage.
---
Then you might know Escondido, where I lived in the '60s and Fallbrook, where I have lived for the last 15 years.
I have a very low power 850nm and 940nm LEDs that I use randomly on various areas for about 10 minutes per day. I've been doing this for over a year. I was interested in this to boost cell mitochondria and haven't really seen any benefits. I was diagnosed with IGM MGUS in Apr 2023.
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.
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.
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!
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!
Don'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.
---
### **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.
---
### **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**.
---
### **Clarification Needed:**
If **LFH** or **NIR** had different meanings in your context, feel free to share more, and I'll adjust the explanation!
Here 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/
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.