28 replies to this topic

[LivingWellWithCML]

Hi,

Ok, I'm ready to take the circumin supplement plunge like some others have done, but I wanted to see how widespread this is among our board community.  Besides the potential benefits for beating down CML (see @Scuba 's journey), I'm looking to its natural anti-inflammatory properties to help deal with my surgically-repaired left ankle, which still feels pretty crummy and aches/swells from time to time.

If you'd be willing to share on this thread:

• Which TKI you're taking it with (I'm on Gleevec 400mg)
• Recommended brand & daily dosage (I know @Scuba takes 8g/daily of a high absorption version ... could be a little pricey, but also wonder what others are taking as well)
• What else you're taking with Circumin to promote absorption (if anything)
• Are you taking it with your TKI dose, or at a different time of day?

Thanks everyone ... would appreciate any and all feedback ...

Dan

[CallMeLucky]

I use the same brand as Scuba, but I only take 2 grams per day, one morning, one in the evening.  I usually don't take it with my Sprycel 50mg, but occasionally I do.  I took when I was on Gleevec but had some weird skin things that I noticed.  I was getting cherry hemangiomas popping up on me.  I had them from Gleevec already but the curcumin seemd to make it worse and when I got one under my eye I stopped taking the Curcumin.  It was one thing to get them on my body but another to start getting them on my face.  When I stopped the curcumin the one on my face went away.  With the Sprycel I have not had them and the Curcumin has not caused any issues at all.  I'm not really taking the Curcumin for my CML, although when I dropped to 50mg I figured it could be a benefit.  The main reason I am taking it is for anti-inflamatory.  I'm not convinced it is helping, but it may be helping a bit.  I'm considering increasing dosage to 3-4grams to see if I can get a more therapeutic effect.  The other reason I am taking it is because I am very scared of getting prostate cancer.  After my PSA shot up and then dropped down I got very focused on it.  I had read on a few different sites that people take Cucumin to prevent prostate cancer.  I have no false illusions but it helps me feel better thinking that I may be doing something that could help prevent it.  So for better or worse I have been taking it, aside from the cost (about $40 per month) I have not seen any downside to it.

[Rissa]

I take Jarrow Formulas Curcumin 95, 500mg once daily with dinner along with C, D, B-12, multi B, iron, and a multivitamin.  I take my 400mg gleevec with lunch.

[LivingWellWithCML]

Thanks y'all.  @Rissa, it looks like your PCR might be trending downward after your last test result that you shared in April!  When did you start the Circumin regimen?  Man oh man, I have to wonder if there's a connection ................

[Rissa]

I was taking curcumin shortly after dx, then I ran out and just didn't buy another bottle.  Then my PCR started going up.  I started taking curcumin again a month before my last test and my PCR went down.  Coincidence?  I don't know, but I don't think I'll ever stop taking it again.

:-)

[alexamay09]

hi, I started about a month ago taking high absorption curcumin twice a day. I increased to 3 caps a day. i am hopeful it will help. 8 months from dx , my last biopsy showed 12 per cent bcr-abl. i would love to hit c-cyr at 12 months.

alex

[akjones]

I'm on exactly the same regime (including the vitamin) also Glucosamine MSM for my joints.. Went from -2.3 log to -2.7 log in 3 months I was taking, lowest I have been in 3 years of treatment. Almost to 6 months mark so I will see if I continue in the right direction. May up to 1000 mg if I am. I'm on Sprycel.

[LLawrence]

I'm on Tasigna and am taking high potency at about 5 grams per day.  I'm not sure if it's helping the leukemia, but it is a huge help with the body aches from age + Tasigna.  My hot flashes seem to be worse, but that may just be coincidence.  In my opinion, the benefits for pain control will keep me on it.

[LivingWellWithCML]

Thanks for your input.  What brand do you buy?

[LLawrence]

BCM 95 from Progressive labs, courtesy of Amazon.

LL

[Pin]

I'm interested to know if anyone else has experienced negative side effects from curcumin? Even small doses?

I already have small blood blisters that pop up everywhere (mostly on my hands), I think this might be a thin skin issue, but adding a 'blood thinner' into the mix may cause problems like Lucky experienced.

[GerryL]

Hi Pin,

I had a couple of extra bruises appear, so stopped taking it.

[LivingWellWithCML]

Ok, I placed my first order of BCM 95 and will start taking it this weekend.  I'm going to start with the standard dose for the first month to see how I'm doing, then increase if I'm handling it without any of these strange side effects that folks mentioned.

Thanks for all of the feedback everyone -

Dan

[Mayra]

I would like to start taking curcumin but will it interact with the ferrous sulfate for my anemia?  Which brand is Scuba using again?

Thanks!

[LivingWellWithCML]

Hi everyone,

I started BCM-95 a few days ago at 800mg daily.  I wonder if that's enough to be therapeutic?

[TeddyB]

Dan: Probably wise to start there, and see how you react to it before considering increasing

[scuba]

I've been out of pocket lately and missed this thread.

I take Physician Naturals Super Curcumin 1000mg with Piperine (pepper extract).

I take 8 grams each day - 4 in the morning and 4 in the evening before dinner.

I did a set of experiments over more than a year (non-scientific) where I decreased my Curcumin dose to 4 grams daily (I hate taking pills) for a 3 month period to see how my PCR responded (Sprycel 20mg dose remained the same). My PCR went up. When I resumed my 8 grams, my PCR went down (one log). When I again tried to cut my Curcumin dose (using a new brand that 'claimed' higher bio-availability than Physician Naturals) back to 4 grams, my PCR went back up.

I resumed taking a full 8 grams during the last three months. My next PCR is next week. So far any dose less than 8 grams has resulted in higher PCR (at least in my case and according to the literature).

Dr. Aggarwal, a researcher at M.D. Anderson specializing in Curcumin therapeutics wrote me that 8 grams is the absolute minimum to see anti-cancer effects (including blood cancers). He told me that taking less than 8 grams is useless since the plasma concentration is not sufficient. So if one were to take Curcumin for CML - it's a waste of effort and money if you only take a few grams.

I have had no side affects at 8 grams. I definitely feel the anti-inflammatory benefit for the arthritis I used to have.

I take the Curcumin in the hope that it enables my low dose Sprycel to work more effectively (as if it were a higher Sprycel dose). There is scientific evidence that this is so for colon cancer (http://www.ncbi.nlm....ubmed/20473900).  I am making the assumption that Curcumin + Sprycel might work for CML since the same cancer metabolic function is affected (NF-kappaB down regulated) among other pathways.

Again - not scientific, but in my case, I believe the Curcurmin is enabling me to get a very good anti-CML response (close to PCRU) without the extra toxic affects of normal dose Sprycel. At 20mg. - which is very very low being 1/5th the normal dose - I have no side affects. None that I can feel. And that is why I sometimes forget that I have CML and have been away from this forum. I'll try not to stay away.

My goal is to get to PCRU and see if I can hold it for six months and then I will stop Sprycel. Perhaps the Curcumin alone (at that point) can keep me undetected. I have no illusions (see CallMeLuckys threads) that this can cure. I'm just experimenting.

[LivingWellWithCML]

Scuba - this is VERY USEFUL information about your journey, coupled with actual input from an expert at MDA.  Thanks for taking the time to share the latest and I'm glad to hear that you're doing well!  8 grams daily is a very expensive proposition I imagine, although I'm willing to try it for the dual anti-cancer + anti-inflammatory benefits.  I've started with only 800 mg daily - sounds like a total waste so far. :-(

What do you think Dr. Aggarwal would say about the use of Circumin with the other TKIs?

[alexamay09]

Hmmn - I have used it for some weeks now though I have ran out and am awaiting delivery of some. It does concern me that such a high dose is needed to be therapeutic as I for one couldn't afford to spend that amount of money. I've been aiming for about a gram although the last stuff I used claimed to have 40 x availability of standard stuff.  I don't know what it would be in dollars but it was nearly £40 for one tub that lasted about 6 weeks on less than a gram a day.

alex

[scuba]

I don't know what Dr. Aggarwal would say about Curcumin with other TKI's. In my view, I think Curcumin would not interact any differently than with Sprycel - which is to not interact at all. Curcumin operates on cell regulation pathways. It slows them down. It seems that plants in general (garlic, beets, onions, etc) have a similar affect in our bodies. The phyto-chemicals/anti-oxidants slow certain cellular pathways. Curcumin, they are finding out, has a pronounced effect. Cancer needs up-regulated pathways to survive. Curcumin interferes with this. It is believed that regular use of Curcumin can help prevent some cancers from ever getting started. For cancers that are advanced, Curcumin has been shown to slow the spread. It is not a cure. But research is looking at using Curcumin to augment other cancer treatments. In my case - to enable me to take a much lower dose of Sprycel and still have therapeutic response - which does seem to be happening.

And I have been taking Curcumin for several years now and my skin has not turned yellow or my hair fall out.