[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Sat Jul 25, 2015 5:21 pm

Hi Eddie,

Your question is one that we all ask and is difficult to answer but yet central to our use of any treatment or preventative.

We can break your question into two parts:

1. Does curcumin work for/with a myeloma treatment generally?

The correct answer in my opinion is only available through HUMAN clinical trial results. You can google this as well and see that there is some evidence but much more needs to be done.

2. Does curcumin work for/with my myeloma treatment specifically?

This is where we live. Unfortunately it may be easier to answer the reverse of this question using disease markers as a yardstick than to try to attribute a causation of stable disease markers directly to curcumin consumption. A lab may be able to tell you that COX2 or NF-kB has been downregulated but what does that mean to your disease state? I know of at least one person who tried a different curcumin formulation, and her numbers began to rise. That was enough evidence for her. I like the "if it ain't broke" approach.

My personal opinion of where the future potential of curcumin will be maximized is in the area of hybrid molecules/compounds where a patented (I.e. for profit) myeloma drug is bound to curcumin to increase efficacy. Curcumin itself can not be patented but it's formulation with other substances can. This would help with funding as well since clinical trials are very expensive in our current system.

To add to the complication, we have a wild wild west of supplement regulation in the U.S. so it's mostly caveat emptor which needs to change as well.

Keep us posted as your journey continues!

Best! BN

[Maro]

Re: Curcumin supplement recommendations?

by Maro on Thu Jul 30, 2015 9:11 pm

Thanks for the info Bar-None.

Do you know if they ship to France?

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Fri Jul 31, 2015 2:34 pm

Maro, I checked with the on-line retail shop that I use and they don't ship the Myodyne internationally currently. However, the Myodyne website states to inquire directly to their "info" email address regarding international shipping fees. Let us know how it goes!

Best! BN

[Maro]

Re: Curcumin supplement recommendations?

by Maro on Wed Aug 05, 2015 6:44 am

Bar none

I have some interesting news.
My mother has had SMM discovered in march 2014

Her M. Spike kept gradually rising at every single blood test done every 3 months. It was discovered at 18g/L and has gradually kept going up to reach 31.6g/L on the 8th June bloodworks.

I decided to give curcumin a try which was the reason I initially posted here and I bought her the BCM 90 version.

My mother started taking them and then 2 weeks later at her latest bloodwork exam done on July 30th the M Spike went down to 30.2g/L.

This is the first time ever that the spike goes down. While it is not much of a drop it remains encouraging considering it had only been 2 weeks since she started the BCM 90. I have no idea whether or not it is related to the curcumin since her hemoglobin also continued to drop from 10.5g/L to 10.1g/L on the same timeframe ... Maybe not enough time for the curcumin to fix that too.

Nevertheless I just wanted to share this information.. Will keep her on the BCM 90 and let you know at her next bloodwork exams in September. Hopefully we'll witness some more improvement.

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Wed Aug 05, 2015 1:02 pm

Thanks Maro,

That is interesting. Thank you for sharing the info. I wanted to also share with the group that I have decided to add the Longvida (Myodyne) curcumin to my Sabinsa C3 (Doctor's Best) regimen. I have started with just one 400 mg capsule mid afternoon about a week ago.

Since I am in CR I debated with myself on the necessity but now I'm pleased with my decision. What I noticed almost immediately was a reduction in this mental fog that was clouding my thinking. I would say unscientifically that my mind is much more clear. The other subjective thing I have noticed is my vision seems to be more crisp, with efforts to focus now seeming easier.

I know these are subjective and unscientific but wanted to share and will keep posting as I encourage you and all to continue to share our experiences.

Best! BN

[bandito]

Re: Curcumin supplement recommendations?

by bandito on Tue Aug 11, 2015 12:30 pm

Hello,

This is my first post, but I thought others might be interested in my experience with curcumin.

I have moderate arthritis in both knees that causes me quite a bit of pain. It was manageable as long as I was using NSAIDS. I made the decision to stop using them and searched for an anti- inflammatory that didn't contribute to kidney issues. I found that curcumin supposedly has some anti-inflammatory properties. I started taking 4 grams a day about 6 months ago.

I really don't notice any difference in my knee issues since starting it. I went for my blood work 3 months ago, however, and for the first time in the 3 years I have been tracking it, my M-spike actually declined. It was only after that when I did further research that I found that curcumin may have anti-myeloma properties.

I am going for blood work next week and am anxious to see if the decrease was an anomaly or if it continues. I am not sure what brand of curcumin I am taking, but if anyone really wants to know, I can look when I get home from work.

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Wed Aug 12, 2015 9:49 pm

Welcome to the forum bandito!

Thanks for sharing your curcumin experience with the forum. I think we would all be interested in the brand since some may be trying to decide which brand(s) work best for them.

Thanks and best to you! BN

[jhorner]

Re: Curcumin supplement recommendations?

by jhorner on Thu Aug 13, 2015 9:12 am

Hello,

I take Thorne's Meriva brand and I find it to be incredibly helpful with inflammation. I used to take NSAIDS daily for back pain (unrelated to myeloma) and hip pain (bursitis) and with the curcumin I no longer require NSAIDS unless I have been very active.

As a smolderer, my disease continues to progress but it progresses very slowly and I have noticed a difference in my M-spike when I am on vs off the Meriva. In fact, when I stop the Meriva and restart it my M-spike really dips, but then it levels off and creeps up again. It seems as though there is a significant initial, positive response but then it loses it's momentum after prolonged use.

I'm going to try a gradual increase in the amount I take. I'm on 4 grams now (mostly due to expense) and increase it to 5 grams for six months and so on - up to 8 grams to see if that momentum is sustainable with an increase.

Even if there is no difference, I will continue to take Meriva for the anti-inflammatory properties that I have enjoyed.

Best
J

[FingersCrossed]

Re: Curcumin supplement recommendations?

by FingersCrossed on Thu Aug 13, 2015 12:59 pm

I take 4 grams of Doctor's Best with BioPerine each day (2g/twice daily). I've been getting labs done every 3 months since Oct 2014 when I was diagnosed as smoldering (IgG Kappa).

I just got back some lab results yesterday and my M-spike is down to 1.5 g/dL. When I was diagnosed, my M spike was 1.9 g/dL.

At diagnosis my IgG was 2411 mg/dL, yesterday it was 2148 mg/dL

At diagnosis my FLC ratio was 2.07 (Kappa and Lambda light chain both in normal ranges), in May it was 1.89 (no FLC results in yesterday's lab profile).

I don't know if this is due to the curcumin or if it's just a temporary dip in these numbers or even measurement error, but the curcumin isn't hurting, so I'll keep taking it.

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Sat Sep 26, 2015 11:14 am

Hi,

There is an interesting study with results for Longvida curcumin. The study found improved cognition and mood was evident after taking 400 mg.

This fits with my experience of clarity of thought after taking it. I have noticed the effects are less dramatic now after a few weeks. I have added another 400 mg dose in the evening before bed with my Revlimid and noticed a deeper sleep that seems to be persistent. All lab results are in normal ranges.

KHM Cox et al, "Investigation of the effects of solid lipid curcumin on cognition and mood in a healthy older population," Journal of Pyschopharmacology, May 2015 (abstract)

Best! BN