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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@amyboylan1

I don’t think my LDH was tested with the other MGUS tests can that be. What is the LDH? Glad yours is normal now.

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LDH is a marker of cell inflammation. Most likely, my LDH was originally high due unrelated injury. I was considering a PET scan to check MGUS progression like bone lessons, but don't want the radiation exposure. My theory is with normal LDH, I'll just check the area where I have pain with a MRI.

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Does anybody have any thoughts using ivermectin, oral paste, any benefits? It is apparently used for parasites & worms. I’m told it helps clean the body. I do not have warm issues.

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@nboulet

Does anybody have any thoughts using ivermectin, oral paste, any benefits? It is apparently used for parasites & worms. I’m told it helps clean the body. I do not have warm issues.

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I would not use it. It says it is used for parasites and worms. That is not MGUS. Suggest talking to your MD and stay away from questionable treatments. Ivermectin is for what it says it is for and definitely not MGUS. It could really cause many complications. It was advised in the last few years by non qualified conspiracy theorists who were advising it cures almost everything. Do not listen to conspiracy. This is a pre cancerous disease. Stick with conventional medicine and some palliative care i.e. massage etc.

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@nboulet

Does anybody have any thoughts using ivermectin, oral paste, any benefits? It is apparently used for parasites & worms. I’m told it helps clean the body. I do not have warm issues.

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@nboulet, claims about ivermectin have been circulating a lot in the news and on social media for the past few years now. Ivermectin should not be used to clean the body or to treat MGUS. Always check the source of information your find and make sure it is coming from a trusted, evidence-based medical source.

Here's more info:
Ivermectin is used to treat river blindness (onchocerciasis), intestinal infection from threadworms (strongyloidiasis), and other kinds of worm infections. Ivermectin is an anthelmintic. It works by interfering with the nerve and muscle functions of worms, by paralyzing and killing them. This medicine is available only with your doctor's prescription; More from Mayo Clinic: https://www.mayoclinic.org/drugs-supplements/ivermectin-oral-route/description/drg-20064397

Ivermectin is not a proven standard treatment for cancer.

While pre-clinical trials (mice studies) show promise, the use of ivermectin alone for cancer control in humans has not yet been tested in human trials. Researchers are actively studying the use of ivermectin in combination with other drugs.

Important
It is NOT safe to take ivermectin used in veterinary medicine. Please talk to your doctor before taking any over-the-counter medications or supplements that claim to fight or cure cancer.

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I have been asking this question as well. This is a known pre cancerous condition but as of now there is no treatment. I think there may be some irons in the fire as on NIH I have read one or two interesting articles and there are a very few trials going on in the country. England seems to have quite a bit to say about MGUS but again I see no validated treatment in the literature. I did come across one article that was promising so keep searching the NIH and the NCI.

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I am also taking turmeric 1200 mg per day and following mostly plant based diet organic smoothie when I can and after doing so after 3 months dropped my IgG kappa 0.6 which was the first improvement in IgG kappa in 29 years of having MGUS also the plant based helped me drop 10 pounds hoping I did not gain it back over the holidays and having less pain in my joints. I hope this helps you. I am following the Sloan Kettering clinical trial guidelines which were posted in this discussion by other members of the group.
https://www.mskcc.org/cancer-care/clinical-trials/22-175
I really want to avoid having to take chemo. My hem-onc doctor was very supportive when I showed him the clinical trial info. Previously I had asked him about taking omega 3 and he was skeptical.

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@pmm

@amyboylan1
I sure will. I don’t look at my chart. I’d rather be in the room with my hem/onc doc so I’ll see him on 1.2. Will post.

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@amyboylan1
I’m happy to report that my Kappa FLC went down from 88.8 to 80.7 MG/L my Lambda FLC was and is in normal range but also went down from 19.8 to 17.8 MG/L and my ratio is down as well.
My hem/onc doc was “overwhelmingly enthusiastic“ by saying that he was not opposed to me taking this supplement.
🤷🏼‍♀️
It’s OK. I understand his un willingness to commit without there being better data, but I’m encouraged.

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There are 2 main issues I have found:
One is what "markers" are followed to indicate progression. Such as the number of the light chain ratio.
Second is clinical trials of agents that might be helpful in slowing the progression of MUGUS. Such as cumcurin.

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@kayabbott

I am 70 and my MGUS started 8 years ago. There is a lot of research now on designer proteins that can lock onto the nasty-bits mutated cells in the bone marrow and stop replication, but those are generally just used in late-stage SMM (smoldering multiple myeloma) or MM. They are not used in MGUS due to side effects, and for most people with MGUS, it doesn't progress to SMM or MM. So, the longer one can go with just MGUS the closer to better treatments. ResearchGate has a lot of good peer-reviewed papers on MGUS, SMM, and MM. A lot of the slowing progression is the same with all syndromes and diseases, take care of yourself, exercise, manage stress, and healthy diet. Keep a food journal in case you have any food intolerances that might cause inflammation or other issues. Some people take bioavailable curcumin. Curcumin is in turmeric root and has been found to decrease TNF (tumor necrosis factor) in high doses (higher than just adding turmeric to stuff). Curcumin is poorly absorbed by the GI tract so supplements\ with peperine (from black pepper) or lipids (fats) and eaten with food help. There are a lot of brands, just make sure it is bioavailable rather than just curcumin or turmeric. I take about a gram/day of curcumin but most of the research is on 4-7 gm/day. It can cause side effects for some and does thin the blood a bit, so check with a doctor before ramping up.

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I agree with what you said.
I am interested in any reported differences in care of MUGUS between MD Anderson & Mayo's that you have found. Such as access to clinical trials. Or how well the institutions communicate with your local hematologist.

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@sunsetchris

I have been asking this question as well. This is a known pre cancerous condition but as of now there is no treatment. I think there may be some irons in the fire as on NIH I have read one or two interesting articles and there are a very few trials going on in the country. England seems to have quite a bit to say about MGUS but again I see no validated treatment in the literature. I did come across one article that was promising so keep searching the NIH and the NCI.

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There are clinical trials for follow up of MUGUS. These seem to be in 2 categories.
First: Investigation of "markers" of progression that might show progression earlier than the standard markers.
Second: clinical trials of agents that have shown promise in slowing the progression. To me, the most interesting is curcumin.

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