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!

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amossarah | @amossarah | May 29, 2023
In reply to @cheft "I have certainly had good days and bad. I think the MGUS diagnosis was easier as..." + (show)
@cheft

I have certainly had good days and bad. I think the MGUS diagnosis was easier as seemed like thinks would be good or slow. Don’t know how to explain it but didn’t seem as real. No that it’s Smoldering I certainly think about it more. It’s easy to go down the rabbit hole but I have to keep telling myself that all I can do is fight my own fight. Keep an I out for options. Try to live/eat better and have faith. I do believe faith and positive mindset matters.

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Yes absolutely!
Good luck for your appointment tomorrow.
Keep us posted!

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | May 30, 2023
In reply to @cheft "I have certainly had good days and bad. I think the MGUS diagnosis was easier as..." + (show)
@cheft

I have certainly had good days and bad. I think the MGUS diagnosis was easier as seemed like thinks would be good or slow. Don’t know how to explain it but didn’t seem as real. No that it’s Smoldering I certainly think about it more. It’s easy to go down the rabbit hole but I have to keep telling myself that all I can do is fight my own fight. Keep an I out for options. Try to live/eat better and have faith. I do believe faith and positive mindset matters.

Jump to this post

The mind-body connection is so important. Anxiety can really throw your whole body chemistry for a loop. When I was first diagnosed with MGUS my anxiety escalated, and my white counts actually soared. I felt weak, it impacted my sleep cycles and my appetite. In short, I just felt crummy. Once I talked to my oncologist, I settled down and sat with reality. I realized that I was making myself feel sick by letting my anxiety run willy-nilly
From talking to people I know who have multiple myeloma, and participating in this message board, I have come to believe that it’s all luck-of-the-draw, but I put my faith in the science. Even with a diagnosis of full blown multiple myeloma, the treatment strategies are much more effective than they were even five years ago. Now, trust me, I don’t want my MGUS to advance to multiple myeloma, but if it does, I am prepared to fight the good fight. Chances are, at age 71, I will succumb to something else eventually, but I have a lot of fun stuff to do between now and then.
I am grateful for good treatment strategies and the patients from whom researchers and clinicians learn. I am thankful that my fellow MGUS patients share their journey with me because we learn from one another. I hope your diagnostics are painless and will yield good news. Let us know.
Patty

REPLY
1 reply
cherylmcg | @cherylmcg | May 30, 2023

I started taking 8,000 mg Tumeric tablets about a month ago. My labs show decrease in one m-spike (.6 down to .48) and increase in the other (I have two spikes) from .2 to .32). It’s hard to know if Tumeric is making a difference. 2018 MGUS showed up in lab work at .1 and .2. At age 71 I think my RA lung condition will get me before MM! I also take 9 mg of iron daily and my RBC is staying just above the below normal line.

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gina5009 | @gina5009 | May 30, 2023
In reply to @michey "As I expected, my hematologist/oncologist would not give his opinion about taking tumeric/curcumin or participating in..." + (show)
@michey

As I expected, my hematologist/oncologist would not give his opinion about taking tumeric/curcumin or participating in any clinical trials involving it. Since I must take an iron supplement to not get iron deficiency anemia, I am careful about taking high doses of tumeric/curcumin based on this 2019 report: "Smith TJ, Ashar BH. Iron Deficiency Anemia Due to High-dose Turmeric. Cureus. 2019 Jan 9;11(1):e3858". Here is copy of abstract from https://pubmed.ncbi.nlm.nih.gov/30899609/:
"Turmeric is increasingly studied as an anti-inflammatory and anti-neoplastic agent. It binds to ferric iron in the gut and causes iron deficiency in mice. We report here a possible case of iron deficiency anemia in a human taking turmeric. A 66-year-old physician treated himself for an osteoarthritis flare after steroids with six turmeric extract capsules (538 mg) daily, to help with inflammation. During this time, his hemoglobin never rose above 12 and his iron and ferritin levels were consistent with iron deficiency. Upper and lower endoscopy and Hemoccult™ studies were negative. Two weeks after stopping the turmeric and continuing his usual iron supplement, his hemoglobin had returned to normal, with normalizing iron studies. Turmeric was associated with significant iron deficiency anemia, consistent with the binding of available iron in the gut and the prevention of absorption. This resolved after the turmeric was stopped, consistent with animal studies. This may be the first case of documented iron deficiency anemia in people due to turmeric supplements. Given the widespread use of turmeric and curcumin supplements across many illnesses, further attention is warranted."

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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

REPLY
3 replies
amossarah | @amossarah | May 30, 2023
In reply to @pmm "The mind-body connection is so important. Anxiety can really throw your whole body chemistry for a..." + (show)
@pmm

The mind-body connection is so important. Anxiety can really throw your whole body chemistry for a loop. When I was first diagnosed with MGUS my anxiety escalated, and my white counts actually soared. I felt weak, it impacted my sleep cycles and my appetite. In short, I just felt crummy. Once I talked to my oncologist, I settled down and sat with reality. I realized that I was making myself feel sick by letting my anxiety run willy-nilly
From talking to people I know who have multiple myeloma, and participating in this message board, I have come to believe that it’s all luck-of-the-draw, but I put my faith in the science. Even with a diagnosis of full blown multiple myeloma, the treatment strategies are much more effective than they were even five years ago. Now, trust me, I don’t want my MGUS to advance to multiple myeloma, but if it does, I am prepared to fight the good fight. Chances are, at age 71, I will succumb to something else eventually, but I have a lot of fun stuff to do between now and then.
I am grateful for good treatment strategies and the patients from whom researchers and clinicians learn. I am thankful that my fellow MGUS patients share their journey with me because we learn from one another. I hope your diagnostics are painless and will yield good news. Let us know.
Patty

Jump to this post

@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

REPLY
3 replies
amossarah | @amossarah | May 30, 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

Jump to this post

@gina5009
Hi Gina,
That it brilliant. Which trial is is, could you possibly send me the link please?
Thanks Sarah

REPLY
1 reply
Mentor
Patty, Volunteer Mentor | @pmm | May 30, 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

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

REPLY
3 replies
Mentor
Patty, Volunteer Mentor | @pmm | May 30, 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

Jump to this post

No! Wow that is great news! If anyone has a link I’d love to read about it.

Patty

REPLY
amossarah | @amossarah | May 30, 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

Patty thank you.

REPLY
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