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Circumin : Who is using it and which TKI are you on?


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#21 scuba

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Posted 05 June 2013 - 08:07 AM

Hi Alex - I have experimented with the so-called higher bio-availability products and they did not work for me. When I tried them, my PCR went up. When I returned to 8 grams, my PCR went back down. I am staying with the 8 grams now more consistently to see if I can continue the trend into PCRU (but do suspect I'll need to up my Sprycel dose for that to happen).

8 grams is a lot and it costs me about 70 USD per month - or about two very nice bottles of Cabernet (Napa valley). We gave up some wine so that I can buy the Curcumin. Life being what it is - I figure spending on health (as long as it works) is preferable.

I am still not 100% convinced on Curcumin - maybe 91%. A few more PCR tests will convince me. I am not willing to stop taking Curcumin altogether to see what that does. It's part of my diet now.

I do want to stress that 8 grams is the therapeutic level for blood cancers (and some other cancers). Anything less and you are wasting money. Two grams is therapeutic for arthritis and other inflammatory conditions. So if you take Curcumin for these ailments - two grams is all you need daily. I take it for CML - so I take 8 grams. I get the anti-arthritis benefit as well.

I look forward to a breakthrough where they truly do find a way to increase bio-availability so a little goes a long way. Most of the Curcumin I take is excreted down the pipes. In that sense, a bunch of money down the drain. Of course taking Curcumin enabled me (perhaps) to take less Sprycel. But there is no difference in price between 20mg. Sprycel and 100mg Sprycel. We're not paying for amount of drug. We're paying for the intellectual property that created the drug.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#22 LivingWellWithCML

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Posted 05 June 2013 - 12:10 PM

Yeah, but you're taking a hit on your wine budget.  Get your priorities in order! :-0

Seriously, this is really helpful Scuba - and amazing to see the impact that Circumin has had on your PCR fluctuations.  I'm going to double my Progressive Labs BCM-95 dose to 1.6g/daily to see if it helps my ankle feel a bit better in the short term, then toss the bottle.  Not sure if I'm ready to shell out $70/month and down 8 grams daily, because I'd also have to sacrifice a portion of my monthly red wine budget.   And chances are that I'd turn yellow .............


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#23 alexamay09

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Posted 05 June 2013 - 12:24 PM

Thanks Scuba. The new stuff I ordered has piperine too. I think that is supposed to increase effectiveness. I am desperate to see my bcr abl count reducing to target levels. Probably not done myself any meaningful good then.  Will make a point of increasing dose when new stuff arrives. It would be great if they ran proper clinical trials. 

Alex



#24 LivingWellWithCML

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Posted 17 June 2013 - 04:34 PM

Hey Scuba,

I forgot to ask -- did you switch back to Physician Naturals Super Curcumin 1000mg with Piperine when you resumed an 8g/daily regimen?


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#25 alexamay09

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Posted 18 June 2013 - 12:56 AM

The new stuff came and I had to laugh. They are 300mg so I'd be taking 2 dozen a day to reach 8 grams, at a cost of £18 every 3 days!

Back to the drawing board:)



#26 scuba

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Posted 18 June 2013 - 05:42 AM

Dan - Yes I did. I take eight of the 1,000mg caplets per day.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#27 hannibellemo

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Posted 18 June 2013 - 06:14 AM

Hi, Dan,

I started taking "Doctor's Best" with Bioperine through amazon. I started out at a low dose of 2 g. per day. Within 2 weeks I had an eye bleed - so I stopped. Not willing to put up with that. I'd only had one before and then was shortly after I started taking Gleevec 4 years previously.

I had told my onc when I started taking it and I told him about the eye bleed, he wondered if I thought it might be from the curcumin and I told him I thought it probably was and I'd stopped the curcumin. He's pretty good about letting me reach my own conclusions.

Good luck to you!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#28 LivingWellWithCML

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Posted 18 June 2013 - 06:48 AM

Thanks Pat - pretty easy to draw a conclusion on that one, huh?   My onc doesn't seem interested in exploring the effects of circumin + TKI on CML ... I brought it up to him.  He is looking at other agents though.  I wonder why CML specialists aren't looking at circumin more seriously?  Although it carries side effect risks, it still sounds like a compelling combo-therapy option that could have benefits for many CML patients.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#29 LivingWellWithCML

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Posted 18 June 2013 - 06:52 AM

Thanks Scuba.  So, they claim that this formulation has even higher absorption potential because of the enteric coating.  What's your take on this one?

http://www.physician...ml#prod_content


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg





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