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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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sunsetchris | @sunsetchris | Dec 29, 2024
In reply to @nboulet "Does anybody have any thoughts using ivermectin, oral paste, any benefits? It is apparently used for..." + (show)
Profile picture for nboulet @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 | @nboulet | Dec 29, 2024

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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2 replies
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dcuste | @dcuste | Dec 29, 2024
In reply to @amyboylan1 "I don’t think my LDH was tested with the other MGUS tests can that be. What..." + (show)
Profile picture for amyboylan1 @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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amyboylan1 | @amyboylan1 | Dec 29, 2024

I am very concerned too. I was diagnosed about 6 months ago.

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amyboylan1 | @amyboylan1 | Dec 28, 2024
In reply to @dcuste "I've been taking close to 2grams/day curcumin for about a month now. My LDH is now..." + (show)
Profile picture for dcuste @dcuste

I've been taking close to 2grams/day curcumin for about a month now. My LDH is now in the normal range so on Jan 2 I'll get MRIs of my lower spine and pelvis.
If the MRIs are normal, I'll probably keep doing what I've been doing. Then decide what next when I get the results of my April blood tests. The only turmeric I take is from the Curcumin supplements. There is at least one trial using curcumin for MGUS.
I'll be happy if my condition stabilizes. It's good to know some people are able to improve.

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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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amyboylan1 | @amyboylan1 | Dec 28, 2024
In reply to @pmm "@amyboylan1 I sure will. I don’t look at my chart. I’d rather be in the room..." + (show)
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@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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Thanks

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thomhorowitz | @thomhorowitz | Dec 28, 2024
In reply to @anneschanck "I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats,..." + (show)
Profile picture for anneschanck @anneschanck

I have a gammatonie monoclonale. I have osteoporis since 30 years and i take medis, biphosphonats, prolia and so on. I take this medis since 30 years, then it gets better and after not taking medis it’s bad again. Infeel sick, but nobody is so terribly interested. I would like to do no more anything a live as long as i live!

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Most all oncologist add the label hemotologist. I work with a “blood” pathologist. They are few and hard to find out of academic circles. My favorite is Dr Thomas Hirose at UCIrvine

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Patty, Volunteer Mentor | @pmm | Dec 28, 2024
In reply to @amyboylan1 "Could you please let us know how your next blood tests go? Thanks" + (show)
Profile picture for amyboylan1 @amyboylan1

Could you please let us know how your next blood tests go?
Thanks

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@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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2 replies
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dcuste | @dcuste | Dec 28, 2024
In reply to @nboulet "I used to get regular blood check on the MGUS for approximately 10 years, there was..." + (show)
Profile picture for nboulet @nboulet

I used to get regular blood check on the MGUS for approximately 10 years, there was no concerns as I have had progressive neuropathy issues and stopped being tested for MGUS until around two years ago, where the numbers have really climbed I have been waiting 30 days to see a haematologist and Will probably take me another 30 days before I get in. I don’t understand value number in 2022 Christmas time was 173 value numbers 2024 November was 685 which is 400% greater. here in Canada. We do have free healthcare for some medical issues, but you do have to be very patient as government doesn’t put a lot of money into it anymore. Totally misleading and the medical system. Here is understaffed.
Does anybody understand these value numbers what they mean?

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About 6 years ago I would meet with Canadian snow birds in the US. My understanding was they had insurance that paid for their out-of-country Healthcare. So they would get everything taken care of in the US. After a certain age the insurance prove was too high for them to travel down.

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dcuste | @dcuste | Dec 28, 2024
In reply to @pmm "@dcuste I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes,..." + (show)
Profile picture for Patty, Volunteer Mentor @pmm

@dcuste
I spoke to my hem/onc doc about turmeric and he sort of rolled his eyes, citing lack of supporting data. Undaunted, I read that some were having success rolling the turmeric dice and I decided to try it.
I checked with my PCP because I was worried about unanticipated consequences with an interaction with other drugs I’m taking. She consulted pharmacy who went through them with me and finding no counter indications, I opted for a daily dose of 1000 mg of Curcumin. My kappa values went from 113.8 to 88.8.
I’ll take it. My lambda went down a minuscule bit. My ratio went from 5.69 to 4.49.
I don’t know that any of this is attributable to the curcumin I get semi annual bloodwork done again this coming Monday. We’ll see if the reduction in values was an anomaly. It sure wasn’t adherence to good diet and exercise as I have not been dedicated to either recently, but I am by nature and empiricist, and I’d like to see steady decline in these values consistently before I get too excited.
I had no Gastro issues whatsoever taking the curcumin. I tried taking turmeric with ginger and let’s just say I had to spend way too much time in the bathroom.
Thank you for sharing this information. Are you taking turmeric and how has this impacted your health?

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I've been taking close to 2grams/day curcumin for about a month now. My LDH is now in the normal range so on Jan 2 I'll get MRIs of my lower spine and pelvis.
If the MRIs are normal, I'll probably keep doing what I've been doing. Then decide what next when I get the results of my April blood tests. The only turmeric I take is from the Curcumin supplements. There is at least one trial using curcumin for MGUS.
I'll be happy if my condition stabilizes. It's good to know some people are able to improve.

REPLY
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