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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dcuste | @dcuste | Jan 25 10:37am

In reply to @pmm "@dcuste I think I’d be on the market for a PCP to be the hub for..." + (show)

I may be confused, but I think my HMO uses the term GP or General Practitioner for PCP. After my Oncologist/Hematologist responded to my email without concern for the MRI findings of AVN, I did email my GP telling him the background of the MRI, referenced this study https://mss-ijmsr.com/mri-spectrum-of-avascular-necrosis-of-femoral-head-in-patients-treated-for-covid-19/ and asked if he provide me with a referral to a specialist, such as an orthopedic surgeon or rheumatologist, to explore treatment options for AVN. From that study I'm pretty sure my AVN is stage 1 and is a result of steroid use.
I haven't heard anything back from my GP yet but I did get a letter informing me to schedule a PET scan appointment. I have no clue why my HMO now thinks I need a PET scan.

Patty, Volunteer Mentor | @pmm | Jan 25 5:38pm

@dcuste
It’s always frustrating when you’re trying to get answers from physicians and they’re not forthcoming. Don’t be discouraged, though, try and get a phone call or telemedicine appointment set up so that the objectives can clearly be explained to you. You have a right to know what the treatment plan will be and what the areas of concerns are.
I am not a physician and this medical terminology can be tricky, but my understanding in very broad, laywoman’s understanding is that the MRI looks at the architecture of the body and a PET scan is looking at soft tissue.
https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
It’s important to remember that a thorough diagnosis will require that they look at all the options so don’t let yourself get nervous when more tests are ordered. The more information that your physicians have about your body that better they’re going to be able to treat you.
To advocate for yourself though and get some more information since they have already scheduled a PET scan.
Let me know how this goes for you.
HUGS!

1oldsoul | @1oldsoul | Jan 26 6:24am

In reply to @hsminc "I just sawca hopeful blurb by a physician at Sloan Kettering that her 12 week study..." + (show)

@hsminc , Thank you for the post. Would you be able to share the link for the article you read? Did it state the participants were on a vegetarian (no meat or dairy) or just a Whole Foods plant based diet? I had previously asked if anyone on the forum had participated in one of Sloan Kettering MGUS clinical trial and had a copy of the allowable foods but I don’t believe anyone responded to the post. Others were interested as well. How long have you been on the plant based diet and do you believe it has had a significant influence on your MGUS markers? I am transitioning to a pescatarian diet- have given up red meat and would have given up all meat except that my digestive system does not handle beans, gluten grains or cows milk dairy so I am concerned about not getting enough protein. Do you feel like you are getting enough protein? I’ll have to find the article I just read and post it, but I believe it said for someone my weight (125) and age (71) that I should be eating 79 grams of protein a day!

hsminc | @hsminc | Jan 26 3:19pm

In reply to @1oldsoul "@hsminc , Thank you for the post. Would you be able to share the link for..." + (show)

I will try to find the link but here is one:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10835229/
It was a preliminary release of data at ASH and referred to the trial that was described on SparkCures.
I have been pretty much a vegetarian all of my life. I do eat dairy, fish and seafood. I eat dairy every day and fish or seafood occasionally - not often.
I don't think I am protein deficient but I don't know. I walk about 3 miles a day and swim. I have energy.
As with causes of MGUS and MM, it is hard to know what has prevented me from developing MM. My dad had SMM *IGA kappa". I have IGG lambda. It started not long after GI surgery for a ruptured appendix. I was horribly sick; had sepsis; would have died except I had a great Mayo surgeon. I was in the hospital close to two weeks with drain tubes getting rid of the pus.
Over the years my FLC have escalated with every joint replacement surgery (4 of them) - all done fabulously well at Mayo. This makes sense in a way because surgery involves inflammation. I had minimal if any pain with any of these surgeries. The pain was before for all of the surgeries but except for the hip, which had disintegrated totally, the FLC did not escalate until after the surgery - and came down a bit but never back to reasonably low. For the hip, my FLC went up before the surgery. Another factor is medications that I take.
I also take ZOCOR and celebrex (brand both of them) and both have been discussed as repurposed drugs for myeloma. There are some VA studies with simivastin and other statin drugs that shows a positive effect on protecting patients from MM and also a study that showed the statin drug affected the myeloma pathway in the liver -- a good thing - mechanism of action is always good to know otherwise you can't really the correlation. My Mayo hematologist did a trial with a Cleveland Clinic hematologist using celebrex. But they could not use reasonably high doses - the dose was minimal. And there were also studies out of California on some celecoxib analogues that looking promising.
I will look for the ASH study later.

Colleen Young, Connect Director | @colleenyoung | Jan 28 8:24pm

In reply to @1oldsoul "@colleenyoung I added colleenyoung into this post as I had seen her post in the past..." + (show)

Thank you for tagging me @1oldsoul.

@dcuste, if you would like to get a second opinion from Mayo Clinic specialists, you can submit a request here: http://mayocl.in/1mtmR63

katrinarn24 | @katrinarn24 | 1 day ago

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.

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Hello,
What type of turmeric do you take? It's hard to find what is reliable with supplements since they are not FDA regulated.

circawdm | @circawdm | 1 day ago

I take a turmeric/curcumin supplement made by a top, long-trusted vitamin and supplement company. I am meticulous in reading the label regarding sources, and what is and is NOT in the capsule. I take a medium dose, and it has shown to be very effective for me in my blood tests and in alleviating my symptoms when combined with other anti-inflammatory supplements, such as extra-virgin olive oil (EVOO), garlic, ginger, vitamin D3, and Omega-3 fish oil.

Patty, Volunteer Mentor | @pmm | 5 hours ago

In reply to @katrinarn24 "Hello, What type of turmeric do you take? It's hard to find what is reliable with..." + (show)

@katrinarn24, I added Qunol Turmeric Curcumin Supplement @ 1000mg, twice daily to my regimen after first talking to my PCP, hem/onc doc, a Pharm.D and Connect members. Several MGUS discussion members recommended the Qunol brand. @circawdm is quite correct in saying that supplements are unregulated so we all have to do our own research. I have had no stomach issues.
After taking this supplement twice daily for about 1.5 years, my “numbers have stabilized to almost exactly what they were when I was first diagnosed. They had been climbing gradually.
I have type two diabetes as a coexisting condition as well as celiac disease, so I wanted to make sure that any supplements I add to my medication list are not going to cancel out the benefits of my prescription medications. Fortunately, there is a.Pharm.D attached to my PCP‘s practice so she called me with a list of my prescriptions and we went through them. She checked them all quite methodically.
My hem/onc guy has been quite dismissive about what I consider to be something to celebrate. He is a consummate empiricist (thankfully!). He will not recommend anything that he believes has not been thoroughly researched and validated. He is very cautiously optimistic about the benefits of curcumin, but is not ready to jump on that bandwagon. So my success so far is, in fact, pretty anecdotal, but I’ll take it!
Advocate for yourself as a patient. They are the experts, and I don’t dismiss anything that my doctors are telling me, but if something outside of the traditional approach may be beneficial, I will need to know what harm will there be in trying? Hearing none I will likely go forward.
Will you let me know how this goes for you?

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