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

Reply to @1oldsoul

When I first started this journey, I based my Hematology questions on ashpublications article on How to manage MGUS
Awhile back, I did contact the people running this study...... clinicaltrials study NCT04731844 but was told I couldn't participate without going to NY for testing. They didn't respond to my other questions on their curcumin specifics.

One of the reasons my hematologist/oncologist gave for not recommending the bone biopsy was my κ/λ ratio of 0.8 wasn't that bad. I did mention that I had a recent episode of unexplained back pain, but it had subsided. That is when she recommended the pet scan.
Another concern I have that she seems to ignore is my LDH has always been high. The last test, 18 months ago, was still 193 down from 240 a year earlier, but still high.
I put all my lab results into ChatGPT. Here is it's response....

While there's no guaranteed way to stop the progression of **MGUS** to more serious conditions like **multiple myeloma**, some strategies may help slow the progression or reduce risk factors. Here's an evidence-based approach:

---

### **1. Maintain a Healthy Lifestyle:**
- **Balanced Diet:**
- Focus on an **anti-inflammatory diet** rich in fruits, vegetables, whole grains, lean proteins, and healthy fats (like omega-3s from fish or flaxseed).
- Reduce processed foods, refined sugars, and saturated fats.
- **Stay Hydrated:**
- Adequate hydration supports kidney function, which is important since MGUS can affect the kidneys.
- **Regular Exercise:**
- Engaging in **moderate exercise** (e.g., walking, swimming) for at least **150 minutes per week** can improve overall health and boost the immune system.
- **Strength training** helps maintain bone health, crucial for preventing bone complications common in myeloma.

---

### **2. Manage Underlying Health Conditions:**
- **Control Chronic Diseases:**
- **Diabetes, hypertension, and obesity** may contribute to MGUS progression. Work with your doctor to keep these conditions well-managed.
- **Monitor Kidney Function:**
- Keep an eye on your **creatinine levels** and **GFR** (glomerular filtration rate).

---

### **3. Reduce Inflammation and Oxidative Stress:**
- **Anti-inflammatory Supplements:**
- **Curcumin (Turmeric):** Some studies suggest it may help slow the progression of MGUS due to its anti-inflammatory and antioxidant properties.
- **Vitamin D:** Low levels are common in MGUS patients; ensuring adequate intake may reduce progression risk.
- **Avoid Smoking and Excessive Alcohol:**
- Both can increase oxidative stress and inflammation.

---

### **4. Monitor and Manage Infections:**
- Chronic or recurrent infections can strain the immune system and potentially accelerate progression. **Vaccinations** (like flu and pneumonia vaccines) can help prevent infections.

---

### **5. Stress Management:**
- **Chronic stress** can negatively impact the immune system. Practices like **meditation**, **yoga**, and **deep breathing exercises** can help.

---

### **6. Regular Monitoring and Early Intervention:**
- **Follow-up Testing:**
- Regular monitoring of **M protein levels**, **free light chains**, and **LDH** is crucial.
- **Prompt Attention to Symptoms:**
- Report any new symptoms (fatigue, bone pain, infections) to your doctor immediately.

---

### **Potential Future Therapies:**
There’s ongoing research into preventive treatments for high-risk MGUS patients, such as:
- **Immunomodulatory drugs (IMiDs):** May one day be used preventively, but currently, no treatment is standard for MGUS without progression signs.

---

### **Key Takeaway:**
While you can't completely prevent progression, adopting a healthy lifestyle, managing chronic conditions, and staying vigilant about your health can help slow the process. Discuss these strategies with your healthcare provider to tailor an approach that suits your specific situation.

I'm in San Diego and am with Kaiser Senior Advantage HMO plan. I haven't been to any specialty clinics. She did indicate she has quite a bit of MGUS experience and didn't recommend that I get a second opinion. I could tell her frustration with big pharma not devoting resources to work on treatments that don't have enough of a return on investment. I do subscribe to IWMF . They seem to have very high hopes on finding a cure soon.
I have been using NIR as an overall cell treatment for about a year now.

Reply to @1oldsoul

When I first started this journey, I based my Hematology questions on ashpublications article on How to manage MGUS
Awhile back, I did contact the people running this study...... clinicaltrials study NCT04731844 but was told I couldn't participate without going to NY for testing. They didn't respond to my other questions on their curcumin specifics.

One of the reasons my hematologist/oncologist gave for not recommending the bone biopsy was my κ/λ ratio of 0.8 wasn't that bad. I did mention that I had a recent episode of unexplained back pain, but it had subsided. That is when she recommended the pet scan.
Another concern I have that she seems to ignore is my LDH has always been high. The last test, 18 months ago, was still 193 down from 240 a year earlier, but still high.
I put all my lab results into ChatGPT. Here is it's response....

While there's no guaranteed way to stop the progression of **MGUS** to more serious conditions like **multiple myeloma**, some strategies may help slow the progression or reduce risk factors. Here's an evidence-based approach:

---

### **1. Maintain a Healthy Lifestyle:**
- **Balanced Diet:**
- Focus on an **anti-inflammatory diet** rich in fruits, vegetables, whole grains, lean proteins, and healthy fats (like omega-3s from fish or flaxseed).
- Reduce processed foods, refined sugars, and saturated fats.
- **Stay Hydrated:**
- Adequate hydration supports kidney function, which is important since MGUS can affect the kidneys.
- **Regular Exercise:**
- Engaging in **moderate exercise** (e.g., walking, swimming) for at least **150 minutes per week** can improve overall health and boost the immune system.
- **Strength training** helps maintain bone health, crucial for preventing bone complications common in myeloma.

---

### **2. Manage Underlying Health Conditions:**
- **Control Chronic Diseases:**
- **Diabetes, hypertension, and obesity** may contribute to MGUS progression. Work with your doctor to keep these conditions well-managed.
- **Monitor Kidney Function:**
- Keep an eye on your **creatinine levels** and **GFR** (glomerular filtration rate).

---

### **3. Reduce Inflammation and Oxidative Stress:**
- **Anti-inflammatory Supplements:**
- **Curcumin (Turmeric):** Some studies suggest it may help slow the progression of MGUS due to its anti-inflammatory and antioxidant properties.
- **Vitamin D:** Low levels are common in MGUS patients; ensuring adequate intake may reduce progression risk.
- **Avoid Smoking and Excessive Alcohol:**
- Both can increase oxidative stress and inflammation.

---

### **4. Monitor and Manage Infections:**
- Chronic or recurrent infections can strain the immune system and potentially accelerate progression. **Vaccinations** (like flu and pneumonia vaccines) can help prevent infections.

---

### **5. Stress Management:**
- **Chronic stress** can negatively impact the immune system. Practices like **meditation**, **yoga**, and **deep breathing exercises** can help.

---

### **6. Regular Monitoring and Early Intervention:**
- **Follow-up Testing:**
- Regular monitoring of **M protein levels**, **free light chains**, and **LDH** is crucial.
- **Prompt Attention to Symptoms:**
- Report any new symptoms (fatigue, bone pain, infections) to your doctor immediately.

---

### **Potential Future Therapies:**
There’s ongoing research into preventive treatments for high-risk MGUS patients, such as:
- **Immunomodulatory drugs (IMiDs):** May one day be used preventively, but currently, no treatment is standard for MGUS without progression signs.

---

### **Key Takeaway:**
While you can't completely prevent progression, adopting a healthy lifestyle, managing chronic conditions, and staying vigilant about your health can help slow the process. Discuss these strategies with your healthcare provider to tailor an approach that suits your specific situation.

I'm in San Diego and am with Kaiser Senior Advantage HMO plan. I haven't been to any specialty clinics. She did indicate she has quite a bit of MGUS experience and didn't recommend that I get a second opinion. I could tell her frustration with big pharma not devoting resources to work on treatments that don't have enough of a return on investment. I do subscribe to IWMF . They seem to have very high hopes on finding a cure soon.
I have been using NIR as an overall cell treatment for about a year now.

Good morning, I have had the diagnosis for four years. I am a 75-year-old caucasian male. I have the Lamda variety of monoclonal antibodies, so I do have some peripheral neuropathy in my feet. My initial M-Spike was only .8. Free light chains and ratio were not too bad.

With no other symptoms or medical issues that could complicate things, and being in the low-risk category, my hematologist/oncologist put me in a wait-and-watch category, and I have blood labs every 4 months. He said I could go every 6 months, but I feel more comfortable with 4 months because my monocytes are a bit high.

I have studied medicine for 50 years as a serious hobby, and for the past 30 years, I have looked upon my health and treatments with a homeopathic or holistic approach, unless I needed an antibiotic or something was too severe for me to handle myself. So I read up on everything about MGUS. I saw common threads from those who had doctors or other medical advisors, looked at studies, etc.

I decided to go on a "Mediterranean Diet" immediately. No sugar, no processed foods, no fried foods, etc. No red meat. It was easy for me because I had been eating pretty healthy for years. My weight was very good. I also cut out other things that cause inflammation in the body and irritate the nerves (the peripheral neuropathy was pretty painful at first). So, I cut out caffeine and any added salt. I started doing exercises for my legs and feet to improve my circulation, I exercised daily as best I could, and meditated to keep my stress levels low.

Importantly, I researched the best most tested supplements for lowering inflammation, killing cancerous cells, and building the immune system. I take D3, **turmeric/curcumin, **Omega 3 Fish Oil gel caps, C, E, Alpha Lipoic Acid, PEA, garlic (natural form and gel pills), a good multi-vitamin-mineral pill, low dose iron, and 2-3 other things that are very powerful antioxidants. I get them on Amazon, so the monthly price is not bad.

While research is still ongoing, current evidence from many studies suggests that high sugar intake, particularly from added sugars in drinks like soda, can potentially increase the risk of developing MGUS (Monoclonal Gammopathy of Undetermined Significance) and other cancers by contributing to obesity, promoting inflammation, and potentially impacting insulin levels, which can fuel cancer cell growth. A balanced diet is crucial for overall health, including for those with MGUS or other cancers.

My peripheral neuropathy and my MGUS blood tests began to improve after 4 months. In the last four years, my peripheral neuropathy symptoms are 60-70% better, and my MGUS tests have consistently gotten lower or stayed stable. My recent tests showed only a .3 M-Spike and normal Free Light Chains ratio and my other bloodwork related to MGUS was either stable or lower.

I found for me, and others I have read about in several well-known studies, that MGUS has to be treated with a multi-disciplinary approach. Unless it is at the point where medical intervention is needed, diet, exercise, supplements, low stress, and daily exercise seem to help slow or even reverse progression. This has been studied with tens if not hundreds of thousands of people now for many years.

So that is my experience. My oncologist calls me "boring," and said if his patients with MGUS and other more serious cancers in their early stages in particular, would follow a diet and other things I am doing, they would be so much better off. It's simply healthy for everyone to ditch processed sugar and foods, fried/fast food, etc. But too many people simply want their sugar and their fast food, etc. They won't do what is needed to lose weight.
And that is certainly their choice. I decided I was not going to allow the MGUS to progress if I could avoid it. So far, all I have been doing has worked. I don't miss sugary food, fast food, red meat or any other of the highly inflammatory. foods. It's like when I quit smoking 40 years ago. After I quit I did not miss it at all and the smell of smoke bothered me.

So that's my story. Everyone is different, but one thing that cannot be denied and which is a proven fact is that inflammation is behind disease processes, and the less inflammation our bodies have in our cells and tissues and organs, the more likely we are to be healthy or healthier.

Thank you @circawdm for your very informative post. So happy to hear from someone who has incorporated diet and holistic remedies with such positive results. Going from .8 down to .3 M-Spike is so encouraging to hear. My M-Spike was .14 at diagnosis in 2021 and is now .4 and my light chains and all other labs have been normal. I have IGM Lambda MGUS. Did your doctor recommend full body CT’s and bone biopsy? And if so, would you have done them? I called my hematologist’s office today and told them I want to hold off until after the first of the year to give me more time to think about this. I have had 6 CT scans in 5 years for other issues (all negative) and I am concerned about how that radiation can affect one’s body. Your story is inspiring so I value your opinion.

@loribmt
@gingerw
Lori and Ginger, I am hoping you have some insights after reading your very helpful thread on Second Opinions. Any thoughts on how I can find out what the standards are (IGM numbers) when it comes to when bone biopsies and full body scans become necessary? I would like to see if I can get a second opinion but is it going to offend my Hematologist?

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?

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.

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?

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.