1. < Blood Cancers & Disorders

MGUS and Curcumin/Tumeric

Posted by michey @michey, Mar 31, 2023

Is anyone here using CURCUMIN/TUMERIC via any of the following with the goal of lowering MGUS' progression:
1. Official clinical trial?
2. Taking it via an oral supplement?
3. Using it in home cooking?

If so, what are your experiences?

(No need to offer advice about the importance of consulting with my own doctor which I certainly will do and hope you will too.)

My post here is to help me gather my questions to ask my hematologist/oncologist in my 4 month follow-up next month.

For information about clinical trials for MGUS, I have checked out:
https://www.mymyelomateam.com/resources/can-you-prevent-mgus-from-progressing
and
https://clinicaltrials.gov/ct2/results?cond=mgus&term=&cntry=US&state=&city=&dist=
Thank you!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

ea1 | @ea1 | May 31, 2023
In reply to @gina5009 "Did anyone else hear this mornings broadcast, that Jewish Scientist think they have a cure for..." + (show)
@gina5009

Did anyone else hear this mornings broadcast, that Jewish Scientist think they have a cure for Multiple Myeloma. They have just completed their first study and all of the participants are now in remission. They are planning on starting their second trial.
Gina5009

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Do you mean the Israeli clinical study published recently ? “An experimental treatment developed at Israel's Hadassah-University Medical Center has a 90% success rate at bringing patients with multiple myeloma into remission.”

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gina5009 | @gina5009 | May 31, 2023

I cannot answer your question. This was a very quick blurb at about 8:30 in the morning on our local radio station in Sacramento. They indicated that ALL of the participants in this trial were in remission and that they were beginning a new trial to try and duplicate the results.
Gina 5009

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gina5009 | @gina5009 | May 31, 2023
In reply to @pmm "Ugh, Sarah. I’m so sorry you had that experience. I think it’s pretty normal to panic..." + (show)
@pmm

Ugh, Sarah. I’m so sorry you had that experience.
I think it’s pretty normal to panic a bit when you hear the “could be…might morph into.” Hopefully your diagnostic tests will come back with good results.
Hang in there.
Patty

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Hi Sarah, Sorry, I only heard this quickly on the morning news. I am trying to contact the station to see if they can furnish me with this information.
Gina5009

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | May 31, 2023
In reply to @gina5009 "Hi Sarah, Sorry, I only heard this quickly on the morning news. I am trying to..." + (show)
@gina5009

Hi Sarah, Sorry, I only heard this quickly on the morning news. I am trying to contact the station to see if they can furnish me with this information.
Gina5009

Jump to this post

https://m.jpost.com/health-and-wellness/article-744499/amp

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gina5009 | @gina5009 | May 31, 2023
In reply to @pmm "Ugh, Sarah. I’m so sorry you had that experience. I think it’s pretty normal to panic..." + (show)
@pmm

Ugh, Sarah. I’m so sorry you had that experience.
I think it’s pretty normal to panic a bit when you hear the “could be…might morph into.” Hopefully your diagnostic tests will come back with good results.
Hang in there.
Patty

Jump to this post

https://www.jpost.com/health-and-wellness/article-726850
Gina5009

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cctoo. Catherine Crowley | @cctoo | May 31, 2023
In reply to @amossarah "@pmm Hi patty, Thank you for such kind words of wisdom. I am just over one..." + (show)
@amossarah

@pmm
Hi patty,
Thank you for such kind words of wisdom. I am just over one week into my journey and still feel petrified. Struggling with panic attacks. Which I think must be a way of grieving. Still at the testing stage, so I don’t yet have a definite diagnosis of MGUS or smouldering MM. I am neither sure of how I’ve ended up on this site as I live in newzealand! But glad I have.
My biopsy was done this morning, the final bit were they take the bone, I had nerve pain which went straight down my leg. Apparently I said I’m going to pass out. I can’t remember saying it! Wow it was strange feeling passing out! I am fine now and importantly they got what they need.
I will keep you posted.
Sarah

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mgus rarely!! goes to MM!!! Forget about it and just live your life !!!

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Mentor
Patty, Volunteer Mentor | @pmm | Jun 1, 2023

True that, and this is a good thing. I think when you are first diagnosed it hangs over your head a bit and it’s a rare human who isn’t frightened by the diagnosis. I am almost two years out from diagnosis. I watch my lab analysis and there is some progression but my medical folks don’t seem all that concerned. I try to stay educated on the disorder and the amazing things that are going on for treatment of multiple myeloma.
There are three subgroups of MGUS and each has its own degree of risk. All low. And yes, we should all live our lives.
https://ashpublications.org/blood/article/131/2/163/37011/How-I-manage-monoclonal-gammopathy-of-undetermined#
Enjoy your Thursday.
Patty

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gina5009 | @gina5009 | Jun 1, 2023
In reply to @amossarah "@pmm Hi patty, Thank you for such kind words of wisdom. I am just over one..." + (show)
@amossarah

@pmm
Hi patty,
Thank you for such kind words of wisdom. I am just over one week into my journey and still feel petrified. Struggling with panic attacks. Which I think must be a way of grieving. Still at the testing stage, so I don’t yet have a definite diagnosis of MGUS or smouldering MM. I am neither sure of how I’ve ended up on this site as I live in newzealand! But glad I have.
My biopsy was done this morning, the final bit were they take the bone, I had nerve pain which went straight down my leg. Apparently I said I’m going to pass out. I can’t remember saying it! Wow it was strange feeling passing out! I am fine now and importantly they got what they need.
I will keep you posted.
Sarah

Jump to this post

Cheer up, when I was much, much younger, I had very severe pain from my hip down my leg and into the calf. I could not find a place to sit or lay down to relieve the pain. I stepped up the stairs from my garage into my kitchin and suddenly, the leg collapsed, and I could hardly get back up off the floor. Fortunately my daughter was here and she took me directly to the doctors office because we both thought I had had a stroke. Well, good news. I had Sciatic Nerve pain. The doctor told me to rest the best I could and gave me pain med's and hope it would go away. A friend suggested that I begin to take B 12 because B 12 has some connection to our Nervous System. I bought the 12 hour release version of B 12, and within about a month the pain was gone and I have never had a subsequent attack.

I do not wish to influenze your treatment, as we both know, Your Doctor is a lot more intellegent than me and knows a lot more about your Nervous System, but it is one of those things (that just might help) and I don't think there is any down side, but check with your doctor before trying.
PS My son visited New Zealand when he was about 20 years old as a guest of the New Zealand Civil Air Patrol. He loved your country and siad if he ever left the United States, he would love to live there.
Gina5009

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