MGUS and Curcumin/Tumeric

Turmeric and Curcumin do not mean the same thing. 95% Curcuminoids in high dose has actually shown to help slow the progression. This has been in actual clinical studies.

So, I have been taking 4500mg of Turmeric Root Extract (95% Curcuminoids with Black Pepper Extract 10%). I also take 1400mg Fish oil or Omega 3. I have been taking this every day for almost 3 months now. My MGUS diagnosis changed to Smoldering MM this past April 6th. Now, I have no idea if it is doing anything at all to slow or reduce my diagnosis. What I can tell you is without question I feel better, less aches and pains and more energy and sleep better. And I haven’t slept well for decades.
I have my first visit and evaluation at the Mayo in Rochester MN on Tuesday, simply for a second opinion. I assume they will at least do labs again next week so it will be interesting if it shows anything positive since my Curcumin regimen. I plan to keep everyone informed of my stats.
If you have read trials out there you will note uptake or absorption is vital to Curcumin efficacy. It is not easily absorbed. I plan to up my daily dose to 6000mg daily after my Mayo visit.

That’s a pretty hefty dose. I will be curious to see what Mayo says. My hem/onc doc says that there is no data supporting herbal cure or slowing progression but I’m taking 1000 mgs of turmeric (pepper infused) daily. Might not help but can’t hurt. I appreciate your willingness to share your results.
I’m so sorry about your progression. That’s not what any of us wants to hear. Let us know what Mayo recommends for treatment plan. I will keep you in my warmest thoughts.
Patty

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."

@cheft We are such unique individuals. Most of us do not progress from MGUS to SMM. Some take a long time, others, not so long. Personally, I think if we progress "quickly", it may be that we had the underlying MGUS as an undiagnosed condition for a long while. In my case, however, I went from MGUS diagnosis to active myeloma in about 2 years. My doctor and I attribute that to my immune system being an overachiever [said with tongue in cheek!].

The concept of supplements and all is fascinating to me. What works? What doesn't? How do we know what to do? Experiences like we share here can help us all see the possibilities.

Like @pmm mentioned, I will be curious to hear what happens at Mayo, how you are treated, and what they will be telling you are the next steps forward for you,
Ginger

I read about this in a previous discussion. I’m also cautious about turmeric due to my Celiac disease and related absorption issues.
My decision to try a small dose may meet some opposition from my “ologists” and if so, I will cease and desist.
12 years of Catholic school and Jewish graduate school influenced my tolerance for guilt associated with the defiance of authority. 😇

Hi cheft, I am new to mayo so not really sure how this app works. I have just been diagnosed with smouldering myeloma. I am having bone marrow biopsy tomorrow and waiting for a specialist appointment in three weeks.
I am very interested to see how you are doing on the Curcumin. Are you still feeling the benefits and how soon are your lab tests?

My first biopsy was over a year ago and my affected marrow was 5-7%. We were monitoring labs every 6 months but then on the one year mark they increased so they scheduled again in 3 months. That was in April, that biopsy said my affected marrow was now at 10% which I was then diagnosed with Smoldering Myeloma. This was all done at the Piper Cancer Center in Minneapolis. I was told I’m low risk and 25% chance it will progress to Multiple Myeloma in next 2 years. The message is “watch and wait.
Since April 2023, my wife and I have chosen to get a second opinion at the Mayo in Rochester MN. My first appointment is tomorrow. We were told test etc. will be decided tomorrow at that appointment. I assume labs will be taken but beyond that, we have no idea. We were told to be available all week for whatever needed done. If they schedule a procedure they get you in same day or next day. They don’t mess around. I’ll post updates. My appointment is with Dr. Dingli

Hey Chef,
Thanks for getting back to me. That’s great they don’t mess around.
I had a CT scan last Friday, which thankfully came back totally clear. Tomorrow I have my 1st bone marrow. I will get the results next month when I see the consultant. My GP has spoken to him regarding bloods etc. so it is possible it is like you smouldering, but a slim chance it’s still at MGUS.
I will be interested to compare my results with yours thank you.
It’s a great idea to get a second opinion.
How have you coped with the constant fear? I feel like a rabbit in the head lights!!!!

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.