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Question for Curcumin users


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#1 SunNsand

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Posted 07 May 2014 - 11:02 PM

I saw my Onc. today and he asked me if I was interested in supplementing with curcumin. He already has a few  patients doing this. He told me the curcumin is expensive so that may be an issue. Anyone that has tried this before, how much is curcumin? He said its specialty made in Ohio.



#2 CallMeLucky

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Posted 08 May 2014 - 11:04 PM

Something $40 for a bottle of 100 x 1000mg.

Problem is you need to take a lot to conceivably get a benefit in terms of "killing cancer cells"


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 mdszj

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Posted 09 May 2014 - 04:14 PM

Isnt this pretty much the same stuff you can buy at Amazon or pretty much any other place?

http://www.amazon.co...urmeric,aps,233

From what I have read, if you take it with some black pepper and with a little oil like olive oil, it works better and is more easily absorbed.

Is there a difference between the bulk turmeric and the stuff in the capsules?


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16


#4 SunNsand

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Posted 09 May 2014 - 10:22 PM

I really don't know anything about the curcumin. From the way he explained it. the quality and amount wasn't readily available. I said I'd have to think about it. I wanted some advice here because I know there are users out there that are experienced. This is the only place I know of to give me feedback.



#5 willowbayfarm

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Posted 10 May 2014 - 04:24 PM

Hi SnS,

I would use the search tool at the top of the page to search for curcumin.  There has been quite a bit of research on the substance, and there is a CML patient on these boards, I believe he goes by Scuba, who is pretty knowledgable about it.  It's interesting that your oncologist brought it up.  Best wishes!

- WBF



#6 Tedsey

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Posted 13 May 2014 - 11:21 AM

Curcumin is expensive?  Compared to TKIs?  Your onc is a little confused.  You can buy it for around $25 US for a bottle of 100+/1000+mg.  The reason why a person would have to take such a high dose is because it is not very bio-available, (I heard/read that 8g would be a standard dose, that is, around 7-8 capsules) .  I read curcumin C3 complex with Bioperine (the trademark name for black pepper extract at 95%) is a must for better cell uptake (or absorption).  I have only read that curcumin may help with the absorption of dasatinib (Sprycel).  I have not heard that it helps with the other TKIs.  Speaking of reading, I wonder what your onc read.  I have not come across many articles regarding curcumin and TKis or support for the combination.  But then, I haven't searched much.  Anyway, you can purchase it at any of the big online vitamin or health stores.  The prices vary.  There are two good brands I found.  I feel curcumin helps me in many ways, even if it is just a placebo effect.  You can private message me for the brands that seem to work well for me. 

Best of luck,

Tedsey



#7 scuba

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Posted 13 May 2014 - 11:50 AM

Hi SunNSand -

I have been taking Curcumin at the 8+ gram level for years now. Tedsey described it above pretty well.

I researched with Dr. Aggarwal at M.D. Anderson on type and amount. C3 Curcumin with Bioperine is the one I take - but I split 4 grams with Bioperine with 4 grams that has no Bioperine. I limit my Bioperine level to only 20mg. per day (5mg per 1 gram Curcumin tablet). It is important not to take Bioperine if you take other medications.

I take 20mg. Sprycel at night and am hovering around PCRU. No side affects (that I feel). My Sprycel dose is 1/5th the normal amount. It's wonderful not having TKI side affects (that I can feel).

I am curious what Curcumin formulation your Oncologist wants you to try? I have tried many so-called high bio-available Curcumin's and found that when I lower my dose (below 8 grams) in proportion to so-called higher bio-availability, my PCR numbers went up. 100% non-scientific correlation on that. So I just keep taking 8 grams a day now. But would love to take less (I hate taking pills - can't seem to swallow them easily). I am hoping for a bio-available breakthrough that really works.

Good luck to you.

Michael aka Scuba

p.s. Curcumin is good for other things like Arthritis and inflammation. I have not had a headache since taking Curucmin. If I were to become miraculously cured of CML, I would still take Curcumin - just not as much (probably 4 grams a 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"


#8 August1

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Posted 13 May 2014 - 12:31 PM

I'd like to increase my Sprycel absorption because I also have to take a PPI which cuts stomach acid. Considering a TKI change but wondering if maybe curcumin might help. (I also get pretty bad headaches.)  So the therapeutic dose of standard curcumin would be 8 grams (or 8 capsules x 1000 mg) per day correct? How about the curcumin C3 complex? Which brand would you recommend?

Thanks,

Bill



#9 CML.Mom

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Posted 17 May 2014 - 04:47 PM

HI Scuba,

How is it that you only take 20 mg and what do you mean by hovering around PCRU in terms of numbers  if you don't mind me asking?



#10 gianfranko

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Posted 17 May 2014 - 10:10 PM

I was wondering if there was anyone out there taking curcumin with gleevec.  I seem to get the impression that is usually paired with sprycel.



#11 scuba

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Posted 18 May 2014 - 06:44 AM

The normal dose for Sprycel is 100mg. I take 1/5 the normal prescribed dose at 20mg (unbelievably small white pill) because I suffered severe myelosuppression at the higher 70mg starting dose.The plan was to begin increasing my dose when myelosuppression came under control (more than a year ago). But instead, my PCR numbers began to plummet towards PCRU - while I was on 20mg. Dr. Cortes (M.D. Anderson) suggested I just stay at 20mg and see where this goes. He has a few patients (outliers he calls them) who did very well on very low dose. And he believes that lower dose is better for health (less side affects and other related issues) if lower dose works. For the better part of a year, my PCR level is at 0.01 M.D. Anderson scale (which is about 0.003 I.S. scale). Anything below 0.01 M.D. Anderson scale comes back as PCRU. I have been at 0.01 for awhile now. I even increased my dose to 40mg. for 3 months in the hope that it would push me into PCRU territory so I could test stopping Sprycel if I could hold it a while - but 40mg. had no impact. I still tested at 0.01. So I went back to 20mg. because less drug = less toxicity = better health. And less is better if less works.

I do take 8+ grams of Curcumin C3 complex. There is a belief (not scientific) that the Curcumin is indeed augmenting the impact of Sprycel's effectiveness and that without Curcumin I probably would not be hovering around PCRU on only 20mg. Sprycel. I am not willing to test going without Curcumin at this point. Curcumin has many other benefits that I now enjoy (zero arthritis for one - no headaches after wine for two).

I test again (PCR) next month. It is my goal to test stopping Sprycel altogether and see if Curcumin can keep me PCRU.


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"


#12 scuba

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Posted 18 May 2014 - 07:01 AM

Gianfranko,

I came across this paper on pairing Curucmin with Gleevec:

http://cancerres.aacrjournals.org/content/65/9_Supplement/1208.4

The authors do report a synergistic effect. This is not a surprise to me. I would expect Curcumin to work synergistically with all of the TKI's not just Sprycel. Curcumin is a down regulator of the important NfKb cell signalling pathway (and other cell signalling pathways). NfKB is vital for CML growth. Slowing down CML should enable the TKI's to be more effective.

On a side note - I personally hope to test that Curcumin alone can keep my CML activity low and tolerable - even PCRU,  without a TKI (Sprycel) once the disease population is significantly reduced (i.e. PCRU). There is some evidence that our immune system does limit and/or reverse CML expansion when CML is put back into a low level. I would never suggest this to anyone else - it is just that I am willing to try it. I believe that if CML were to increase again (by at least one log as measured by PCR), I would just resume taking Sprycel again. All evidence suggests that TKI's reduce CML the same way as before the TKI was stopped. This is why so many CML experts are stopping therapy to treat myelosuppression rather than using STIM shots and keeping therapy going. The fear of CML progression without therapy is not as great as it used to be when therapy is stopped temporarily. CML is a slow disease when not in Blast crisis and PCR is extremely sensitive (like the canary in the mine shaft). That gives me time to test. There was a time when I was off any TKI for 3 months (while still taking Curcumin). My PCR number did not change - although at that time, it was much higher than it is now. The fact that it did not change was of important interest to me.


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"





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