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.

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Profile picture for dcuste @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.

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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.

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Profile picture for 1oldsoul @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.

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Praying for you

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

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Profile picture for 1oldsoul @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.

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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.

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Profile picture for 1oldsoul @1oldsoul

Yes, I googled Sabinsa Curcumin and it came up as the registered trademark of “Curcumin C3” which is a form of 3 curcuminoids that are then used by various vitamin companies in their products. I will include a photo of one I purchased in the past although I will probably search for a different brand as I recently emailed the Igennus company asking why they state on the bottle “do not exceed the stated dose” and they never replied. If you Google QWell Pharmaceutical vegan Omega 3 it is the same situation-they have the patent and I just ordered from The Veggie Doctor. Let me know if you have any other questions! Glad to help.

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Forgot to include the pic of the Curcumin I have at home that I referenced in my post.

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Profile picture for dcuste @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

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.

REPLY
Profile picture for amyboylan1 @amyboylan1

Thank you for this very informative post. Do you know if the average person not in the trial can purchase those brands of Curcumin and omega? How do you plan to get them?
Thanks so much,
Amy

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Yes, I googled Sabinsa Curcumin and it came up as the registered trademark of “Curcumin C3” which is a form of 3 curcuminoids that are then used by various vitamin companies in their products. I will include a photo of one I purchased in the past although I will probably search for a different brand as I recently emailed the Igennus company asking why they state on the bottle “do not exceed the stated dose” and they never replied. If you Google QWell Pharmaceutical vegan Omega 3 it is the same situation-they have the patent and I just ordered from The Veggie Doctor. Let me know if you have any other questions! Glad to help.

REPLY

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.

REPLY

Thank you for this very informative post. Do you know if the average person not in the trial can purchase those brands of Curcumin and omega? How do you plan to get them?
Thanks so much,
Amy

REPLY
Profile picture for 1oldsoul @1oldsoul

I have found good results for inflammatory pain in general with Qunol Turmeric Enhanced Absorption 1500 mg (in 2 capsules) which has 95% Curcuminoids. Make sure to check your iron while on Turmeric supplements since it may lower iron absorption in some individuals. I believe there are different versions so I have included a pic. I also have MGUS diagnosed in 2021 with high IGM and low IGA and IGG with normal light chains and have not needed a bone biopsy or PET scan yet. I am 70 years old and in good health and have always eaten a mostly plant based diet with very little processed foods. Meaning my diet emphasizes whole foods rather than what you find in a box or already prepared. Several months ago I switched to Doctors Best Curcumin with Meriva on the advice of a naturopathic physician. I go in for labs next month (every 6 months) so we’ll see if it makes any difference. I have also started Red Light therapy using the Redrush 400 from Redtherapy Co mostly for Plantar fasciitis on my left foot and degenerative disc in my lower back and in only 2 weeks I have noticed 50% or better reduction in pain and swelling in my heel so I am very encouraged! It was recommended by Energy Blueprint and if you use that name as a coupon code you will get a discount. (Saved me $100!) Since I have always walked 2-4 miles every day since I retired in 2019 the plantar fasciitis was not healing although I had to limit my walks to 2 miles and now I am slowly increasing to 3 again! There are some studies (check Sloan Kettering Memorial) that a 100% plant based diet may have beneficial outcomes for MGUS/MM. I will update here in November if there are any beneficial changes in my labs.

Jump to this post

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.

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