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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@pmm

@dcuste
I think I’d be on the market for a PCP to be the hub for your treatment providers. They don’t know about all the specialty services but they should know who to hook you up with. I look for a good internist to serve as PCP.

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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.

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@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!

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@hsminc

I just sawca hopeful blurb by a physician at Sloan Kettering that her 12 week study of putting a limited number of patients on a plant based fiber diet to prevent MGUS progression had positive results. Patients were 86 percent compliant.
It was a small study for a short time but two MGUS patients whose values were fast tracking in the wrong direction had this trend stopped - maybe even regress - I can’t remember.
Since I am on a plant based diet I thought this was great. I don’t think dairy was allowed. I do yogurt, milk in my coffee and very occasionally have seafood. BUT I have had MGUS for 23 years.

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@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!

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@1oldsoul

@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!

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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.

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@1oldsoul

@colleenyoung
I added colleenyoung into this post as I had seen her post in the past on second opinions at Mayo. She is one of the mentors on the forum. Or perhaps your general practitioner can recommend a radiologist or other specialist for a second opinion. Are you near a teaching hospital?

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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

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