[Maro]

Re: Curcumin supplement recommendations?

by Maro on Sun Sep 27, 2015 12:52 pm

Hi BN,

Could you please tell us what your treatments have been prior to curcumin? Just Revlimid or have you also taken other treatments before?

What were the results?

My mom is about to start a trial on Revlimid-dexamethasone with possibility of daratumumab. She has become symptomatic.

[Spirit]

Re: Curcumin supplement recommendations?

by Spirit on Sun Sep 27, 2015 9:08 pm

I have appreciated reading posts about people's curcumin research and personal stories. I have a question about the dosage of curcumin:

I have read that 4 grams a day is the typical dose but recently I have read a couple posts stating people using 6 grams or even 8 grams a day. Is this higher dose research based or one that is being tried out to see if myeloma numbers improve?

Thanks.

Spirit

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Sun Sep 27, 2015 9:43 pm

Hi,

Maro, I had standard Revlimid / Velcade / dex (RVD) induction 4 cycles, then a stem cell transplant last September. Two cycles Revlimid 25 mg consolidation (no dex) , and now 10 mg Revlimid maintenance. In complete remission after transplant. There were 2 infusions of Cytoxan (cyclophosphamide) prior to the transplant. Zometa infusions were monthly mw every 3 months maintenance.

Spirit, I have been on 8 grams Doctor's Best since March 2014. Then added the Longvida recently. I selected the dose based on the MD Anderson trial but other than that just a finger in the air. I've been in complete remission since the transplant so no numbers to improve but it helps my knee and shoulder and cognition so will keep the dose high for now.

I have no cytogenetic abnormalities.

Best! BN

[Spirit]

Re: Curcumin supplement recommendations?

by Spirit on Mon Sep 28, 2015 2:17 pm

Thanks, Bar-none, for the information. How do you take 8 grams of curcumin a day? 500 mg tablets or 1000 mg? Three or four times a day?

Spirit

[Bar-none]

Re: Curcumin supplement recommendations?

by Bar-none on Tue Sep 29, 2015 10:55 am

Hi Spirit,

I take four of the 1 gram tablets of Doctor's Best C3 (Sabinsa) formula and one of the Myodyne 400 mg capsules (Longvida) twice daily. The morning dose is with 2 tablespoons of Barleans organic flax oil (and other meds) and the evening dose is taken with the 10 mg Revlimid.

It was difficult for me to keep a more frequent curcumin dosing schedule so after a couple of months I went to only 2 doses, morning and night.

Best to you! BN

[Kevin]

Re: Curcumin supplement recommendations?

by Kevin on Tue Sep 29, 2015 3:01 pm

I've been taking 13 g for the past 6 months. Doctor's Best brand. I dissolve them in just a trace of water, then mix with peanut butter or mix in with pancakes. I started with 5 g/day and worked my way up. It has lowered my FLC about 15% and I feel better.

The first time I started was about 8 years ago because my free light chains were skyrocketing. I started on 5 g/day and was able to lower them in 18 months by 40%. Unfortunately, I got over­confident and stopped taking it. In 24 months they spiked back to the initial level, and I started again. I haven't gotten my free light chains down to where they were a couple of years ago, but the trend is definitely down. Slower than the first time, but it does seem to be working.

[Spirit]

Re: Curcumin supplement recommendations?

by Spirit on Tue Sep 29, 2015 7:39 pm

Thank you Bar-none and Kevin.

I am taking the 500 mg Doctor's Best curcumin phytosome featuring Meriva three times a day to equal 4 grams. These are huge pills! Should I even ask how big the 1000 mg pills are?

And Kevin, very interesting about adding the pills to a liquid or pancakes. I never thought about that.

Spirit

[bgmiller80]

Re: Curcumin supplement recommendations?

by bgmiller80 on Sat Oct 03, 2015 5:37 pm

Below is the response I received from my pharmacist when I asked about taking curcumin while currently taking Velcade / cyclophosphamide / dex (CyBorD). I assume these are valid concerns, but would appreciate any other thoughts.

---

There are some theoretical drug interactions with curcumin:

a) Curcumin has antioxidant effects so will negate the effects of cyclophosphamide (Procytox)

b) Curcumin has antiplatelet effects and will increase the risk of bleeding especially when the platelets are at the lowest point.

c) Curcumin is an immune modulator and may delay the recovery of counts.

d) Curcumin may inhibit the enzyme systems which metabolize cyclophosphamide, bortezomib, ondansetron and dexamethasone and so increase the side effects of these drugs.

The research while looking promising, is still in the early stages (primarily pre-clinical, and some very small clinical studies) and in particular has not studied the effects of combination use with chemotherapy, in particular your regimen of Velcade, Procytox, dexamethasone. So it would be prudent to avoid using curcumin for the entire duration of chemotherapy until one month after completion of chemo.

[Lev]

Re: Curcumin supplement recommendations?

by Lev on Sat Oct 03, 2015 10:32 pm

Hi Bob,

As I understood what your doctor said, a patient under treatment for myeloma should probably avoid curcumin, but while not in treatment it should not do any damage?

Best regards

Lev

[Nancy Shamanna]

Re: Curcumin supplement recommendations?

by Nancy Shamanna on Sun Oct 04, 2015 8:09 am

On the topic of taking curcumin supplements, I would like to say that I did take the Doctor's Best brand as described in this thread (500 mg) last year when I was not on chemotherapy. Since my monoclonal and serum free light chain (sFLC) counts were slowly rising, I thought that might help. I did relapse anyways, and when I went on treatments again, the recommendation is NOT to take any supplements, so I stopped taking it.

I can't really say that taking the curcumin helped me at all. It may also have harmed and speeded up the relapse! Or, it could have delayed the relapse! I don't think that I have any way of knowing that actually.