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Curcumin - one year since Dx.


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#1 scuba

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Posted 16 May 2011 - 11:30 AM

As many of you know, I have been unable to get back on Sprycel due to myelosuppression.  Since late January my ANC was crushed to 0.1 (after just two weeks of Sprycel) has been climbing back to near 1.0 ever since.  I have plateaued around 0.86 (very constant).

The thinking is that the Curcumin I have been taking (500 mg) is keeping the Leukemia from expanding, but nothing else.  I have decided to increase my Curcumin intake from 500 mg to 8 grams per day as per what I have been reading.  I am currently up to six grams a day.  In a few more days I should be at the therapeutic dose of 8 grams.  Supposedly at this dose this is where Curcumin's effect will  be most pronounced.  We'll see.

My goal is to stay on Curcumin at this does for 3 months and then have a PCR taken.   Also - if my PCR shows a marked drop (big anticipation), I will add 20 mg. Sprycel per day to begin the process of finally getting at the PH+ chromosome with a TKI.  For whatever reason I am living with a high Ph+ chromosome in my bone marrow which does not make it out into my circulating blood (zero FISH).  ? very interesting.   And my white blood cells, although 'depressed' are maintaining a constant level.

It is my thinking that if I can keep the pressure on the Leukemia  - then I may be able to overcome myelosuppression and finally start a process of using a TKI to get at the Ph+ better.  Curcumin, from what I read, kills the CML cells by downregulating the cells activity and causing apoptosis.

Also - Curcumin is natural and beneficial to the body (strong anti-oxidant).   There are zero side affects (that I have experienced or documented) and it has been proven safe upwards of 12 grams per day.  There are no studies evaluating Curcumin + Sprycel for CML, but there are studies showing tremendous effacacy with Curcumin + Sprycel for Colon cancer.  At my current six grams, I feel no different.  I take it on an empty stomach with an omega-3 oil pill.  The oil helps the Curcumin get absorbed.

The worst case is I am delaying serious treatment - but with zero blasts (bone marrow test) and WBC's at 2.6 and ANC = .85 and my red blood starting to rise into normal range - I figure I have nothing to lose and I can invest 3 more months.

Dr. Cortes has no knowledge of Curcumin so it is outside his experience.  He has no advice for me but is curious.  But Dr. Aggarwal - also from M.D. Anderson - is very familiar with Curcumin and told me about the 8 grams dose.

Not a cure - just a management device.  Do not try this at home since this is not FDA sanctioned.  I just wanted you all to know what I am doing.  I can experiement on me.  And if this works, hopefully there will be clinical trials.  I am still going in for weekly CBC's to monitor.  If my ANC were to miraculously increase above 1.0 then I will consider resuming Sprycel sooner.  Sprycel absolutely nails the PH+ chromosome in my case.

p.s.

8 grams is a lot of Indian spice.   Cost = $100 per month.


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"


#2 Happycat

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Posted 16 May 2011 - 07:25 PM

Michael,

Do you like the taste?  I would think 8 g would be hard to take if it tasted nasty.  Is it the same thing as cumin, or slightly different?   Heck, I've got a huge bottle of cumin I bought at the Indian grocery store about 5 yrs ago at least.

Traci



#3 janne

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Posted 17 May 2011 - 02:31 PM

Michael,

I find your postings to be quite fascinating and look forward to all that you have to contribute in this area. I also appreciate that you provide a disclaimer about "not trying this at home" but certainly you CAN experiment on yourself. I am all for experimentation ! Keep up the good work and the reporting to us ! Where else would we hear about this unless one of our members were to actually step out and try something a little different ? !  Thank you for sharing this and the best to you !!! Janne


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#4 scuba

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Posted 17 May 2011 - 03:03 PM

Thanks Janne.  Eventually I have to get back on Sprycel to get at the Philadelphia Chromosome we all hate so much.  All I think Curcumin is doing is  causing my Leukemia population to die off rather than live long and overpopulate.  I was told that my bone marrow at last check is "empty" - unlike at diagnosis when it was labelled, 'hyper-cellular'.  Hopefully I am growing normal cells in sufficient numbers that I can wean myself back on Sprycel (re-start at 20 mg Dasatinib).

I do wonder if Curcumin was used by folks prior to Gleevec if it would have extended life long enough to make a difference.

As far as the taste, Happycat - there is no taste.  I take it in pill form on an empty stomach.  I am not familiar with 'Cumin'.   There is zero side affects that I have experienced.  I half expected my skin to turn yellow!  I do notice a "clarity" of thought and my dreams are more vivid ... but then again I have always had vivid dreams (in living color).


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"


#5 PhilB

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Posted 17 May 2011 - 04:23 PM

Easily confused, but curcumin is derived from the Indian spice turmeric and as far as I'm aware has nothing to do with the completely different (and rather tastier) spice cumin - which is more commonly used in mediteranean / middle eastern food.

I haven't done it for years, but I used to enjoy doing fish coated in a mix of equal parts chilli powder, turmeric and salt then fried.  Very tasty, but everything you cook in the pan for the next month ends up yellow.  That way you could get your curcumin and fish oil and actually enjoy the flavour of both.



#6 Trey

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Posted 17 May 2011 - 09:03 PM

http://www.whfoods.c...odspice&dbid=78

I have two words to say: "Curcumin sharts"



#7 Happycat

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Posted 19 May 2011 - 03:37 PM

Phil,

Thanks for the tip!  I've got a huge bottle of turmeric in my spice cabinet, too, and nowhere near enough recipes to use it on!  I might just give that recipe a try!

Traci



#8 Susan61

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Posted 19 May 2011 - 05:36 PM

Hi Michael:  I look forward to your postings on all your doing.  I know how determined you are to find something that has never worked before.  I do wish you well with the things you are trying to test.  I guess thats how they find what works in the long run.  Maybe we will find out at some point that your Curcumin was a big asset in curing Leukemia.  Just be smart and careful in all you do.  Your young and we want you around for a long time. Your in my prayers.

Susan



#9 gianfranko

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Posted 23 May 2011 - 02:48 PM

How are you taking the curcumin?  As a turmeric extract?  Powdered turmeric?  Are mixing with anything?  From what I understand curcumin has a low solubility in water and thus is very poorly "bioavailable" (most of it is not absorbed by the body)

I read some places that the best way was to dissolve the turmeric extract/curcumin in somekind of fat.  Some places I have heard about using olive oil; others suggest just dissolving in whole milk.

So when your were told by Dr. Aggrawal to take 8 grams per day, what was his suggestion as to how to take it?






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