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

Posted by amyboylan1 @amyboylan1, Oct 12, 2024

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Ginger, Volunteer Mentor | @gingerw | Dec 27, 2024

In reply to @nboulet "I was diagnosed with MGUS at age 45, around 20 years ago, the numbers were very..." + (show)

@nboulet Welcome to Mayo Clinic Connect. Have you had regular check-ins with your doctor over the years, to "watch and wait" for any changes? You are proof that we can go for many years with no additional symptoms after a diagnosis of MGUS.

How soon will you be able to see your hematologist? Do you have a list of questions ready to get answered?
Ginger

nboulet | @nboulet | Dec 27, 2024

I was diagnosed with MGUS at age 45, around 20 years ago, the numbers were very low and told not to worry about it. 18 years later, 2022 the value numbers from the blood test are 173 not sure what value numbers are. 2024 November numbers went up 400% to 685 not sure if that is good or bad waiting to see a hematologist. I do know the last couple years my progressive neuropathy has worsened. I have had progressive neuropathy for 15 years very bad balance, and difficult walking now.

dcuste | @dcuste | Nov 28, 2024

Anybody have any thoughts on Turmeric/Curcumin C3 dosing? I am currently taking 1g/day. The study I referenced earlier is using 8g/day.
Oncology has agreed to a LDH test. She is also agreeable to a skeletal scan rather than the PET scan. My thinking is to wait on the results of the scan and LDH test before changing the dose. Here is what ChatGPT has to say....

The **maximum dose of turmeric/curcumin** can vary depending on the formulation, individual health status, and specific health goals. Here's an overview of what is generally considered safe and effective:

---

### **Curcumin vs. Turmeric:**
- **Turmeric root** (the spice) typically contains about **2-8% curcumin** by weight.
- **Curcumin** is the **active compound** in turmeric, and most supplements are standardized to provide **high concentrations of curcumin**.

### **Curcumin C3 Complex:**
- **Curcumin C3 Complex** is a patented form of curcumin extract that contains **curcuminoids** (curcumin, demethoxycurcumin, and bisdemethoxycurcumin). It is designed to be more **bioavailable** and effective than regular turmeric.

---

### **Recommended Dosage:**
- **Standard curcumin dosage:**
For general health, typical doses range from **500 mg to 1,500 mg of curcumin** per day.

- **Curcumin C3 Complex:**
Clinical studies often use doses of **500 mg to 1,500 mg per day** of **Curcumin C3 Complex**. The total dose is usually divided into **two or three doses** throughout the day.

- **Maximum dose:**
- **Up to 2,000 mg to 3,000 mg** of curcumin per day has been used safely in studies, particularly for **short-term use** (up to 3 months).
- Higher doses, such as **8,000 mg per day**, have been used in some clinical trials without significant adverse effects, but these were under **medical supervision**.

---

### **Safety Considerations:**
- **General safety:**
Curcumin is generally considered **safe** when taken at doses up to **3,000 mg per day** for short periods. Long-term high-dose use may require supervision, especially in individuals with certain medical conditions.

- **Potential side effects:**
Higher doses may cause:
- **Gastrointestinal issues** (e.g., nausea, diarrhea, or stomach upset)
- **Headaches** or **dizziness** in rare cases
- **Risk of bleeding** (curcumin has mild anticoagulant properties, so caution is needed if you take blood thinners)

- **Interaction with medications:**
Curcumin can interact with:
- **Blood thinners** (e.g., warfarin, aspirin)
- **Diabetes medications** (it may lower blood sugar levels)
- **Chemotherapy drugs** (consult your oncologist if you are on treatment for MGUS or any other cancer)

---

### **Enhanced Bioavailability:**
Curcumin has **poor bioavailability** on its own. To improve absorption:
- **Combine with piperine (black pepper extract)**: Enhances absorption by **up to 2,000%**.
- **Formulations like C3 Complex**: These are already designed for better absorption.
- **Take with fat**: Curcumin is **fat-soluble**, so consuming it with healthy fats (e.g., olive oil) helps.

---

### **Conclusion:**
- For **Curcumin C3 Complex**, a dose of **500 mg to 1,500 mg per day** is typical.
- **Maximum dose:** Up to **3,000 mg per day** is generally considered safe for short-term use, but consult a healthcare provider for long-term use or higher doses.

If you’re considering curcumin for a specific condition (such as managing inflammation or supporting MGUS management), discussing the appropriate dosage with your healthcare provider is best, especially if you're taking other medications.

amyboylan1 | @amyboylan1 | Nov 27, 2024

In reply to @gingerw "@1oldsoul @loribmt has given you some great information already, as have others. To address your thoughts..." + (show)

Thanks Ginger. Appreciate your response

Ginger, Volunteer Mentor | @gingerw | Nov 27, 2024

In reply to @1oldsoul "@loribmt @gingerw Lori and Ginger, I am hoping you have some insights after reading your very..." + (show)

@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

8positive | @8positive | Nov 26, 2024

ChatGPT 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!

circawdm | @circawdm | Nov 26, 2024

In reply to @dcuste "I like your overall plan and think I'll adopt it. I already take many of the..." + (show)

The lower your glucose and if you can avoid glucose "spikes" by eating right, it will help greatly as far as inflammation in your body!

dcuste | @dcuste | Nov 26, 2024

In reply to @circawdm "Good morning, I have had the diagnosis for four years. I am a 75-year-old caucasian male...." + (show)

@circawdm

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.

Jump to this post

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.

kayabbott | @kayabbott | Nov 26, 2024

In reply to @1oldsoul "@loribmt @gingerw Lori and Ginger, I am hoping you have some insights after reading your very..." + (show)

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/

dcuste | @dcuste | Nov 26, 2024

In reply to @amyboylan1 "Could you tell me what LFH NIR. And IMIDS are. Thank you so much for all..." + (show)

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!

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