Is there anything to help stop or slow progression of MGUS?
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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I was diagnosed in 2013 at 42 years old. I am now 53. I was told the same thing, there is not treatment at this time. I’ve been seen by a Doctor who comes over from Dana Farber to the VA , I am a Veteran, twice a year for blood work to check my status. It fluctuates but hasn’t progressed other than Smoldering Myeloma.
I can’t give you much more information right now. I am deployed overseas with the Army.
I can offer support and friendship.
Eileen
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5 ReactionsThey mean your MUGUS is progressing. Your hematologist needs to consider treatments to slow the progression. If your hematologist is not willing to consider this , you should go to a cancer center.
they mean your MUGUs
You might want to research treatment of MUGUS with curcumin.
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1 ReactionThere 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.
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.
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.
@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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5 ReactionsI 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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2 ReactionsI 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.
@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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