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

My IgE was 90000..no one knows why??

I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats, prolia and so on. I take this medis since 30 years, then it gets better and after not taking medis it’s bad again. Infeel sick, but nobody is so terribly interested. I would like to do no more anything a live as long as i live!

@dondi2101, I'm bringing @pmm into this discussion too.

Getting results from a different lab may result in variations of testing. It sounds like the Mayo lab results were very thorough. What did your doctor say about the test results? When will you have the next round of lab work done for comparison?

@dondi2101
Hi Dianna!
All good questions. The chance of progression to MM or SMM is low, so while I don’t worry a lot about it (diagnosed in 2020) much of the reason I don’t worry is that I get medical care from an established Cancer treatment organization with a great reputation. It’s really important to find a treatment provider who treats Multiple Myeloma. You don’t have MM, and we hope you never will, but you want someone who treats patients within the spectrum every day. Think of getting a colonoscopy. You’d want somebody that does two or three a day rather than somebody who does two or three a year, right?
So my first question is why your clinician is sending out your labs? Mayo is the gold standard, so while they do a great job, I wonder why your provider isn’t equipped to process and review those lab results? You definitely need information and to get your questions answered.
Some of our members who live in rural areas have to travel to get a good diagnostic and follow up work up. It’s a pain, but it’s reassuring to get all your questions answered.
Another advantage of being seen in a large, well-established setting is that you have the availability of Ancillary services. Whenever I start a new medication, I always ask for a pharmacy consult so that they can look at any combination of the medication that I’m already taking with the new medication. This includes any over-the-counter supplements that I take. It’s been quite helpful to get their considered opinion. There are many medications that have the potential to impact kidney or liver function. You definitely want your physician to be on top of that and along with your MGUS testing. If there is a pharmacist connected to the hematology/oncology provider, then they are well-versed in this.
I also receive periodic scans to make sure that there are no bone lesions because that indicates progression.
I always feel sad when people can’t get the information that they need from their treatment provider. When you see someone once a year and you get lab results, which are not explained to you that is insufficient and unacceptable. Can you call your provider and ask for a telephone call return or, a telemedicine appointment?
I did a quick search and I did find this about certain medications and multiple myeloma. Nothing specific to MGUS.
https://www.mymyelomateam.com/resources/can-certain-medications-raise-the-risk-for-developing-myeloma
Do you mind sharing a little more about your provider situation? Are you close to a teaching hospital? Cancer treatment center?
I’m really glad you found this group because I always learn from our experienced members I hope there will be an information that is useful to you.

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.

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 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.

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.

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.

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