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

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.

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.

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.

---

### **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?

I'm going to have digest all this info here and come up with a plan. I did ask ChatGPT for radiation exposure comparisons...

Here’s an expanded comparison of radiation doses across various common medical imaging procedures and some additional insights:

---

### **Radiation Doses for Common Imaging Procedures:**

#### **X-Rays:**
- **Dental X-Ray (Bitewing or Panoramic)**:
- **0.01 – 0.03 mSv**
- Equivalent to about **1 day** of natural background radiation.

- **Mammogram**:
- **0.4 mSv**
- Equivalent to about **7 weeks** of natural background radiation.

- **Abdominal X-Ray**:
- **0.7 mSv**
- Equivalent to about **4 months** of natural background radiation.

#### **Computed Tomography (CT) Scans:**
- **Head CT Scan**:
- **2 – 4 mSv**
- Equivalent to about **8 months – 1 year** of background radiation.

- **Abdomen and Pelvis CT Scan**:
- **10 – 20 mSv**
- Equivalent to about **3 – 7 years** of background radiation.

- **Full-Body CT Scan**:
- **20 – 30 mSv**
- Equivalent to about **7 – 10 years** of background radiation.

#### **Nuclear Medicine Scans:**
- **Bone Scan (Nuclear)**:
- **6 mSv**
- Equivalent to about **2 years** of background radiation.

- **Thyroid Scan (Iodine-131)**:
- **1 – 5 mSv**
- Equivalent to about **1 – 2 years** of background radiation.

- **PET/CT for Cancer Staging**:
- **12 – 25 mSv** (depends on duration and tracer used)
- Equivalent to about **4 – 8 years** of background radiation.

#### **MRI and Ultrasound:**
- **MRI (Magnetic Resonance Imaging)**:
- **0 mSv** (uses magnetic fields, no ionizing radiation).

- **Ultrasound**:
- **0 mSv** (uses sound waves, no ionizing radiation).

---

### **Insights for Minimizing Radiation Exposure:**

1. **Medical Necessity:**
- Ensure that imaging tests are clinically necessary and discuss alternatives (like MRI or ultrasound) when appropriate.

2. **Cumulative Exposure:**
- If you undergo frequent imaging, maintain a record and share it with healthcare providers to avoid unnecessary repeat tests.

3. **Low-Dose Options:**
- Some facilities offer low-dose CT scans, particularly for lung cancer screening or follow-up imaging.

4. **Shielding:**
- Protective shields (lead aprons) can reduce exposure, especially during dental or abdominal X-rays.

5. **Risk-Benefit Discussion:**
- Always discuss the risks versus benefits with your doctor, especially for higher-dose procedures like PET or full-body CT scans.
### **Whole-Body Low-Dose CT (WBLDCT) Scan: Radiation Overview**

**Whole-Body Low-Dose CT (WBLDCT)** is commonly used for screening or monitoring conditions such as **cancer, multiple myeloma, or other systemic diseases**. The radiation dose is significantly lower than that of a standard full-body CT, making it a safer option for routine follow-ups.

---

### **Radiation Dose for WBLDCT:**
- **Typical Dose:** **2 – 4 mSv**
- This is considerably lower than a standard full-body CT (20 – 30 mSv).
- Equivalent to about **8 – 16 months** of natural background radiation.

---

### **Uses of WBLDCT:**
1. **Oncology Monitoring:**
- For tracking progression or response to treatment in cancers like multiple myeloma or lymphoma.
2. **Cancer Screening:**
- Investigational for lung cancer or metastases in high-risk patients.
3. **Bone Disease Assessment:**
- Detecting skeletal lesions or fractures in conditions like MGUS or myeloma.
4. **Whole-Body Screening:**
- Occasionally used in preventive health checks, though this is controversial due to low yield and unnecessary radiation exposure.

---

### **Advantages of WBLDCT:**
- **Lower Radiation Exposure:** Safer for routine or repeated imaging.
- **High Sensitivity for Bone Lesions:** Particularly useful for conditions involving bone marrow or skeletal involvement.
- **Quick and Non-Invasive:** Provides comprehensive imaging in a single scan.

---

### **Considerations and Limitations:**
- **Clinical Justification:** WBLDCT should be used when there’s a clear clinical indication, as routine use without symptoms can lead to over-diagnosis.
- **Not Always Suitable for Soft Tissues:** While excellent for bone, WBLDCT may not detect small soft tissue abnormalities as effectively as standard-dose CT or MRI.
- **Repeat Scans:** Even at low doses, cumulative exposure from frequent WBLDCTs should be monitored.

---

### **Comparison with Other Imaging:**
- **Standard Full-Body CT:** 20 – 30 mSv
- Much higher dose, reserved for specific diagnostic needs.
- **PET/CT:** 12 – 25 mSv
- Used for metabolic activity, often complementary to WBLDCT.
- **MRI or Ultrasound:** 0 mSv
- Preferred for soft tissue evaluation without radiation.

---

### **Conclusion:**
**WBLDCT** is an effective tool for ongoing monitoring with reduced radiation risk. It’s especially valuable for patients needing regular imaging, like those with MGUS or multiple myeloma. However, it’s important to balance its use with the principle of **ALARA (As Low As Reasonably Achievable)** to minimize cumulative radiation exposure.

Would you like insights on how often WBLDCT is recommended or comparisons with other follow-up strategies?

Yes, the first CT was for skeletal and the second CT a week later was for neck, chest, abdomen and Pelvis with contrast. The paperwork did not mention WBLDCT. When I contact my hematologist at the first of the year I will ask if they are considered low dose. Hopefully he will let me just do the bone biopsy first. Thank you for your replies.

Having the BMB before all the imaging sounds like a reasonable plan. The biopsy goes to the heart of the blood manufacturing site…the marrow. So it is a primary tool in diagnosing blood disorders. You could see what the results are from there and then talk to your hematologist oncologist about followup scans.

If it helps ease your concern, from what I’ve learned is that WBLDCT (Whole Body,Low Dose, CT scans) used for whole body imaging for MM patients, has much less radiation than regular CTs. And MRIs do not use radiation to acquire imaging.
Were those the two scans your doctor mentioned?

A year ago he told me that he didn’t think the MGUS would progress to Waldenstrom’s based off of normal light chains, IGM which didn’t seem very high to him and other normal blood work. He now said he wants a “baseline” but I am more concerned about the 2 full body CT scans more so than the bone biopsy because of the fact that I just had 4 CT scans in the past 2 years (other diagnoses) and I’m concerned about so much radiation when it seems other doctors want to watch and wait. I am going to contact him next month and see if he will agree to just do the bone biopsy first.

Hi @1oldsoul, I read through a few of your earlier posts just so I could get a better understanding. You were diagnosed with MGUS a couple of years ago and your doctor suggested just to watch and wait. Which is very standard practice. For some patients, they never progress beyond the surveillance stage.
It looks as though followup blood results are showing a small upward trend in some of your numbers. It seems like our doctor is being thorough and recommending a few more tests run to see if there are any changes in your bone marrow and its ability to produce healthy blood cells. This would be helpful if there has been any possible progression to MM and as a baseline for future results for comparison.
What is your hesitation with having the tests run?

Hi 1oldsoul,

Great news for you! 🙂 The full body CT or a PET scan are both very expensive, and many insurance companies will not pay for them. My doctor never thought they were necessary with a low-risk patient who gets regular blood tests, has no enlarged spleen or liver, etc. Radiation overuse, as you noted, is not good for people with or without any type of cancer or in MGUS' case, "pre-cancer!"

I did have a bone marrow biopsy early on, which I would encourage, so they can see everything and get all of the genetic testing done, and also check for amyloid issues. I later also had a "fat pad biopsy" on my stomach, where in his office surgery area a surgeon specializing in biopsies made just a half-inch incision (after giving me just a local shot of Lidocaine), and then used forceps to quickly pull out maybe an inch of fat thru the incision, and cut it into 3 pieces to be sent to the lab to stain and see if there were any amyloid cells. Ammylodosis is nasty and hard to treat, so when I got a negative result from the Congo stain they used, I was relieved. It took 15 minutes or so and 3 sutures. It discolored/bruised a little for a week. After 4-5 months there was no scar at all. I would suggest doing that and the bone marrow biopsy (have it done in a CT scan bed so the doctor can see the best place to insert the needle). That took 10 minutes to numb things, an IV with a little fentanyl, and local Lidocaine. I felt a little pressure twice, but otherwise, it was no big deal at all.

The hospital had me stay in a "recovery area" recliner for 2 hours afterward, then home. Someone had to drive me of course. My hip muscle was sore for maybe 3-4 days. Otherwise, it was very straightforward. A few doctors do these in their office, which I would NOT recommend! You want to be somewhere they have the right equipment and other things in case they are needed.

That's all I got. 🙂 Feel free to ask any questions. Continued good luck with the MGUS!