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

Posted by amyboylan1 @amyboylan1, Oct 12 10:14pm

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.

@1oldsoul

This is an update to my previous comment on Oct 14. My labs last week indicated that the IGM continues to steadily increase-still with normal light chains and regular lab work such as CBC and complete metabolic panel. Soooo, the hematologist now wants to do a complete skeletal, neck, chest, abdomen and pelvic CT and a bone marrow biopsy as a “baseline.” My IGM is now 697 and he states he always runs those tests at 700. With that being said, I am switching over to the Sabinsa C3 Curcumin that Sloan Kettering uses in their trial of a Whole Foods plant based diet, along with Qwell Pharmaceuticals Algae (vegan) Omega 3 (also in their trials) and I’m going to transition into going vegan. Because the hematologist stated that the MGUS I have would probably progress to Waldenstrom’s rather that MM (if it moves from MGUS) I am more committed than ever to using any natural methods possible to halt the progression since I am extremely sensitive to the side effect of drugs. (he stated they do have drugs that can treat Waldenstrom’s but I am scared to death of side effects) On a super positive side, the Red light therapy I have been using for plantar fasciitis is a game changer!!! Within 2 weeks of using it I noticed a huge difference and I am now back to walking 4-6 miles every day. I use the red light therapy 10 minutes per day 5 days a week at a distance of 6” from my feet ( the bottoms of my feet pointing toward the device.) I do an an additional 10 minutes further away from the device front and back for whole body healing. With the amazing results I have had for plantar fasciitis I am hoping it will somehow help the MGUS as well. The clinical trial gov ID is NCT 05640843 for the trials of Whole Foods plant based diet. I believe I gave the link in a former comment. If anyone that was in their trial (which is ongoing until 11/2026 and I believe is still accepting participants if you can make it to New York and New Jersey) has an official printout of their Whole Foods plant based diet could you provide it here? I know many participants were provided 2 ready made meals per day which were provided by Daily Harvest according to the info I read. I will keep y’all updated after my scans, bone biopsy and at my next lab. By the way, I will be 71 in January and have no other health issues just for info. Wishing y’all a happy Thanksgiving and a blessed Christmas. Let’s pray for each other that we can take control of our health and let God work his miracles. God bless you all.

Jump to this post

I take MegaFood’s Turmeric and MSK pharmacist said it was similar to what they use in the trial. I would love to see food details also if someone has it. I’ve not gone vegan but plant-based which incorporates some fish and chicken, e.g. Mediterranean diet, and now exercise regularly. Have been stable for last year.

REPLY

Glad you’ve been stable for the past year. How much exercise are you doing?

REPLY
@1oldsoul

Thank you so much for your reply. I am also of the opinion to watch and wait for awhile longer but my Hematologist is very conservative. I recently asked him at what level he would consider the IGM to be very concerning and he stated 1500. I worry about all the radiation in the scans but my Hematologist is the only one in my area so I don’t want to refuse his treatment plan. Thank you for praying for me. I will do the same for you. Please keep me updated and I will do the same. Since I have been very sensitive to side effects of medications since my teens I have always had to look for natural remedies and will continue to do so to beat this, God willing.

Jump to this post

Praying for you

REPLY
@dcuste

Reply to @1oldsoul

Thanks for the update. I'll be praying for you.
My Hematologist/Oncologist has a much different more laid back process than yours. My IGM was 774 a year ago. Now it is 1608 and she still has me on the wait and see program. I asked about using Curcumin, but she advised against it since I'm using Pradaxa. I told her that Cardiology only put me on it because of a brief period of A-fib that hasn't been an issue for over 2 years now. She also nixed the bone biopsy at this time, put did agree to a Pet Scan.
My light chains are normal but IGG is low at 640. She didn't have an opinion on my prognosis or even if I was headed toward WM or MM. She claims to be very up to date on MGUS and the only way to deviate from the health plan standard of care, was to find a trial on my own. The standard it to wait until there are symptoms or IGM get to 3000.
BTW, my thinking is that this all started 2 1/2 years ago when I was hospitalized for pneumonia and treated with erythromycin, prednisone and insulin.

Jump to this post

I wonder why the different medical opinions as to when the IGM is high enough for concern and when to do the bone biopsy and scans? Has anyone else on the forum discussed this with their physician and what was the consensus? I would really rather not have 2 full body scans (radiation) and the bone biopsy at this point especially right before the holidays when we plan to go out of state so I may discuss holding off until the first of the year. What state is your doctor in? Have you been to Mayo or any other specialty clinics? I live in rural Arkansas and choices of hematologists are limited.

REPLY
@1oldsoul

Thank you so much for your reply. I am also of the opinion to watch and wait for awhile longer but my Hematologist is very conservative. I recently asked him at what level he would consider the IGM to be very concerning and he stated 1500. I worry about all the radiation in the scans but my Hematologist is the only one in my area so I don’t want to refuse his treatment plan. Thank you for praying for me. I will do the same for you. Please keep me updated and I will do the same. Since I have been very sensitive to side effects of medications since my teens I have always had to look for natural remedies and will continue to do so to beat this, God willing.

Jump to this post

@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?

REPLY

I felt the same way but got a second opinion anyway

REPLY
@1oldsoul

I wonder why the different medical opinions as to when the IGM is high enough for concern and when to do the bone biopsy and scans? Has anyone else on the forum discussed this with their physician and what was the consensus? I would really rather not have 2 full body scans (radiation) and the bone biopsy at this point especially right before the holidays when we plan to go out of state so I may discuss holding off until the first of the year. What state is your doctor in? Have you been to Mayo or any other specialty clinics? I live in rural Arkansas and choices of hematologists are limited.

Jump to this post

Mayo rejected me. Said I already had an oncologist.

REPLY
@amyboylan1

Mayo rejected me. Said I already had an oncologist.

Jump to this post

Did you get a second opinion from a hospital like MD Anderson or just another hematologist/oncologist in your area? If a hospital, did you do telemedicine or in person?

REPLY

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.

REPLY
@1oldsoul

I wonder why the different medical opinions as to when the IGM is high enough for concern and when to do the bone biopsy and scans? Has anyone else on the forum discussed this with their physician and what was the consensus? I would really rather not have 2 full body scans (radiation) and the bone biopsy at this point especially right before the holidays when we plan to go out of state so I may discuss holding off until the first of the year. What state is your doctor in? Have you been to Mayo or any other specialty clinics? I live in rural Arkansas and choices of hematologists are limited.

Jump to this post

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
Please sign in or register to post a reply.