Stopping Myeloma at the MGUS Stage

I am been dealing with the same diagnosis for sometime now (53 years young) My team of teams have been monitoring my blood every 3 months as well. Plus annual PET scan. I am not only dealing with MGUS, Plasmcytoma, SLE and extreme anemia in which I have had a unit of blood almost every month. All due to my deployment in Iraq in 2008. All my doctors at the VA and outside the VA hospital are all working together with monitoring my health. I could not ask for a great group of doctors.

@carolesg
When I went from quarterly blood draws to semiannual, my hem/onc doc asked if I was comfortable with that. I agreed that I was. My impression was that he could justify medical necessity if I decided I wanted to continue having blood draws every three months. That’s the key, I suspect, because paying for these appointments and testing out of pocket would be a budget breaker for sure.
I am quite comfortable with getting my blood drawn every six months. If I started having night sweats or something that caused me concern about progression, I would certainly schedule an appointment immediately. So my watch and wait regimen is a semi annual blood draw and CTs. I’m good with that. We are all different so we are likely all going to have a different comfort threshold.
I’m glad you are going to advocate for a level of care that is reassuring to you.

Hi,
I was diagnosed with MGUS about six weeks ago. Like all of us I want to do whatever I can to keep it from progressing. I seem to get mixed information about whether there is medication that can lessen the progression or not. Can I please get some information from you who have had it longer. Also, can you tell me where you get the Curcumin? I have only seen Tumeric with Curcumin. I am quite confused about the difference since I’ve seen them in pill form together. I’m so glad I found this group. This new diagnosis is very scary for me and I can use all the support and guidance i can get. I thank you all.

MGUS is scary, but only a tiny percentage of people have it progress to smoldering MM or MM. It is asymptomatic, so no need for any meds unless it morphs into MM. I mostly just eat healthy, exercise, get enough sleep, and try to manage stress. Tumeric is a root that is related to ginger, and small amounts of an active anti-inflammatory chemical in it is named curcumin. These are poorly absorbed by the GI tract unless one adds black pepper (active ingredient piperine) or takes supplements in which the curcumin has been modified by adding a lipid (fat) molecule to it, which greatly improves absorption. I take a couple of grams of bioavailable (modified) curcumin a day, just to see IF is has any effect on my bloodwork. The brand I use is Qunol, but there are other brands. Unfortunately supplements aren't regulated by the FDA so tis a guess at what works. Check with a doctor before taking supplements because they have side effects. There are a lot of peer-reviewed papers online about MGUS, and ResearchGate also has research. Here are a couple of links: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9301229/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10111629/

I'm in a research study right now that is trying to stop Myeloma in its tracks. I was diagnosed with MGUS in 2022. I just started this study protocol in May, and glad I did because a new bone marrow biopsy showed I had progressed to SM. For the first 3 months of the study, I took a curcumin-bioperine supplement or a placebo (I don't know which) of 1000mg twice daily. I take it with a combination of fats to aid the absorption. After a month of being on the supplements, my numbers dipped slightly, but now after 3 months, they have gone back up to about what they were before the supplement. My research doc says it is probably just a normal variation. Today, I started the 2nd phase by switching to a whole-foods, plant-based diet. The study has been done before without the supplements and had very promising results. This part of the study for me runs at least through April 2025. I joined the study because like you, I didn't want to sit around and wait for progression. I also didn't want to take any more drugs, as I've struggled with a variety of health problems over the past few years and the "cures" were worse than the "disease" although it did lead to my initial MGUS diagnosis. I've been doing much better since I stopped taking the medications and I'd like to keep it that way.

I hope you continue to do well on the study. When I visit my new myeloma doctor at University of Pennsylvania Health System later this month I would like to ask him about this study. How did you get in the study and do you know if the study is still admitting patients? Is it institution dependent? Does it have a name? Thank you for any additional information. Carole

The study is done at Memorial Sloan Kettering Cancer Center out of New York City. I live in PA (near Gettysburg) and must travel to one of their New Jersey centers to do my labs. (The Monmouth center would be closest to you.) Most of my visits are able to be done through Telehealth. You can look up Dr. Urvi Shah Nutrivention Study on YouTube to find some videos about it. (I am in Nutrivention 2 & 3 studies) I believe they are still admitting patients, but the videos have information on contacting them about enrollment. My regular hem/onc is through Penn State Health and he never mentioned anything to me about using nutrition or supplements to help slow down the disease. But then, as you will hear on the videos, most doctors have very little schooling in nutrition and don't advocate for natural remedies. Good luck to you!

I wish we had a study like this in Canada.

Nutrivention seems to possibly imply nutritional intervention. I wonder if this study is examining whether a meat-free diet will cause MGUS to stop progressing. It’s an interesting proposition. My husband and I were never big meat eaters but we stopped eating meat entirely almost 20 years ago. While my disease has “progressed” from one simple Mspike of 0.4 kappa, in 19 years I now have three bands, one including Lambda, mostly light chains and 0.5 M spike, but have not progressed to actual myeloma. Thank you for all your helpful information and best to you. Carole

Perhaps you could share this information with your doctor to see if you could spark some interest. Good luck and best wishes with your disease. Carole