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#1 akjones

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Posted 13 March 2013 - 09:07 AM

I started taking Curcumin 3 months ago. My last BCR/ABL before starting was a 2.1 log reduction. I took 500 mg (high bio-available formulation) each day at the same time as my Sprycel. My most recent BCR/ABL test was a 2.7 log reduction, the lowest I have recorded in 3 years on three diferent TKI's. Not ready to declare a strong correlation here but this is promissing.

Andy



#2 Mayra

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Posted 13 March 2013 - 10:10 AM

That's great news! Those that are taking curcumin, can you please post info on dosage, and where and what to buy.

Thanks,

Mayra



#3 akjones

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Posted 13 March 2013 - 10:30 AM

I use Jarrow Formulas Curcumin 95, 500mg



#4 scuba

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Posted 13 March 2013 - 08:00 PM

I am certainly a fan of Curcumin as many on this board know. I take 8 grams every day (4 in the morning; 4 in the afternoon) and have been for years.

My CML burden dropped significantly during the time I started to take the full 8 grams. I am currently at 0.001% PCR pending my latest PCR test which I am hopeful will be PCRU. I only take 20mg. Sprycel (1/5th the normal dose).

I have not concluded that Curcumin is responsible for the CML drop - but I am encouraged since my CML is so low while on such a low dose of Sprycel.

I do want to point out, that the 500mg of Curcumin 95 you are taking is not enough to make a difference. It's way too low a dose. Curcumin (especially Jarrow Formula's) is not sufficiently bio-available. Dr. Aggarwal at M.D. Anderson reported that therapeutic dose's for Cancer are not observed until dose reaches over 8 grams. Anything less, he told me, won't make a difference. You could be an exception.

There are new formulations on the market which purport to have increased bio-availability (such as Theracurmin, Meriva), but there is no proof of efficacy. It seems they just put less Curcumin in their product.

I have taken Physician Naturals Super Curcumin w/ piperine (8 grams). During the last 3 months, I have been taking Meriva Phytosome just to experiment with a so-called higher bio-available Curcumin. The chemistry in Meriva Phytosome makes sense to me as a mechanism for Curcumin transport from the GI-tract into the blood (via Phosphotidylcholine).

Although I am taking Curcumin because of my CML - I have noticed huge positive effects unrelated to the disease. My C-reactive protein levels are extremely low (0.6) and I no longer have any arthritic pain (no inflammation). This is really the good news. My C-reactive protein was always above 1.0 until I started Curcumin.

The good news is that Curcumin certainly doesn't hurt your TKI therapy - and probably enhances it. My big test will come when I stop taking Sprycel assuming I can get to PCRU and hold it for six months. Then I will just take Curcumin.


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 akjones

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Posted 14 March 2013 - 08:58 AM

Scuba, I agree that my dose is certainly on the low side. I have read your posts with interest in the past and have also read the literature. I was concerned about possible side effects of higher doses. Just wanted to put another data point out there regarding Curcumin use. My plan is to ramp up slowly and watch my test results. My personal opinion is that BCR/ABL has a repeatability of no better than 0.5 log so test scatter is a big issue. I want to get at least two tests at this dosage then try 1g/day. I am noticing a good anti-inflamatory benefit even at this lower dose. I have stopped taking glucosamine for my chronic knee soreness and now am keeping up my weekly running at about 50 miles/week with no knee pain at all.



#6 scuba

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Posted 14 March 2013 - 10:05 AM

Curcumin's anti-inflammatory benefit is realized with the normal dose recommended on the bottle (1-2 grams daily). And for most people that is fine. The down-regulating benefits in the genes that affect CML, however, are not seen below 8 grams. I have experienced this myself when I lowered my Curcumin dose to 4 grams just because I hate taking so many pills, and my PCR jumped up almost a log at next test. I resumed the 8 grams (used Physician Naturals C3 Curcumin) and the following test my PCR not only dropped back the one log, but fell another 1/2 log further. And it has continued to drop since then.

Is it the Curcumin? I don't know. What I am doing is not scientific. It's anecdotal. There does seem to be some correlation. I do know that with my taking only 20mg. Sprycel, I am very close to PCRU. That is a big outlier in M.D. Anderson's statistics. But they do have a few patients who only take 20mg. and are in my category (MMR without Curcumin). None at PCRU. I would be the first if that happened. And Dr. Cortes does not tell me to stop taking Curcumin. He is intrigued with what I am doing. But he doesn't endorse it, encourage it or discourage it. When I ask him, "do you believe the Curcumin is the reason the 20mg. is so effective", he responds, "could be". Until there is a scientific trial with a significant number of patients - we won't know.

I do know that Curcumin is not interfering with the Sprycel (TKI negative interaction) and is probably augmenting the drugs effect. So I continue to take it. It is my hope (and it is just hope) that Curcumin's documented down-regulating effect on the cellular pathways necessary for CML growth is sufficient to keep my CML at bay while I discontinue Sprycel. That is what I intend to do. And will do this on nothing less than 8 grams of Curucmin per day. It's not a "cure", just management. I have no fear of CML progression because I stopped taking Sprycel. I'll just go back on Sprycel - or maybe a newer drug.

After all of the drug breaks I have had and the yo-yo PCR /FISH numbers in the early stages, I am pleased I seem to have found a strategy that is working. Most important, my formerly suppressed counts (which was my new normal) are in fact in the normal range as of last test (neutrophils at 2.5 = wow). I am beginning to think my blood system is getting back to a true normal.

And - Lent is almost over so I can get back to my wine and XR21 Scotch and chase my wife around the house like I did before Lent started. My wife is working out in anticipation.


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"


#7 alexamay09

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Posted 15 March 2013 - 07:40 AM

Hi

I am very intrigued to read this.  Anything that might help is worth a try. I am still trying to get count down since my diagnosis last September and onc has me on sprycel 140mg each day. Fatigue is a major issue. Will order up some curcumin

alex



#8 LivingWellWithCML

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Posted 15 March 2013 - 07:58 AM

I wonder - I know you used the Sprycel / Curcumin study a while back to help inform your decision, but is Cortes considering a formal study of Curcumin & CML TKI treatment by chance?  So interested in this given your amazing response on low-dose Sprycel!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#9 scuba

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Posted 15 March 2013 - 08:23 AM

Dr. Cortes would welcome a study. There is no money to conduct a scientific trial. Until "Curcumin" can be patented, there is no incentive for any drug company to sponsor a trial. So research that is done using Curcumin is usually in Academic research settings (NIH grants) and not specific to a particular disease necessarily. The only study I am aware involving Sprycel and Curcumin was in colon cancer (where the positive correlation was reported).

We would need to have a similar trial done using Sprycel + Curcumin on a statistically meaningful sample of CML patients. Dr. Cortes is willing to do this.

In the mean time, I am my own study. I do believe there is a correlation (strong one in fact), but it is my opinion and it is not scientific. The good news is that after more than a year on high dose Curcumin (even with low platelets during some of this time period), I have had only positive effects (arthritis, etc.). So I know, for me, it is safe to take. But Curcumin is not a panacea. Some researchers point out that Curcumin in high dose can have some negative effects:

http://personal.us.e...dark_side_of_curcumin.pdf

Trey points out that the down regulating affect Curcumin has on many cell processes can't be all good.

The effects, in my view, are minor in comparison with the benefits and then can be monitored (iron chelation). And since CML (and cancer in general) is a runaway cell process - some downregulating is just fine with me. And it is not clear just how much Curcumin one would have to ingest to get these negative effects given Curcumin's generally low bio-availability.

Still - it is important to note everything we can find out about whatever we take. Too much water can kill you too.

I take Curcumin. I take 8 grams of it every day. My skin is better for it. My joints are better for it. And my Sprycel is taken in a lower dose because of it (my view; jury still out on this one).

It hasn't changed my sex life though. Wife still runs away when I go hunting.


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"


#10 Barb@Anderson

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Posted 15 March 2013 - 10:51 AM

I am on Gleevec and was wondering if the curmumin could be taken with it.  All post so far as I have noticed concering this the patient is taking Sprycel.  When i go back in May my onc will decide if I am improving by taking 400mg three times a week and 200Mg the other days.  If not, should I ask for Sprycel ot Tasignia.  I am confused.  If a mutation test is done will it show what med to change to?  Since I went back on the higher dose 3 times a week, the side affects have become bad again.  I was feeling alright on the 200 a day but was so fatigued.  Now not only am I fatigued but having stomach problems and headaches.  I have not had headaches in a long time now I have one starting every afternoon and it gets worse by bedtime.  Sorry I got off the original subject of curcumin.  My mind just goes from one thing to another.  Do any of you have that problem.  I used to stay focused but lately it's been difficult to say the least.  . 



#11 akjones

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Posted 15 March 2013 - 11:03 AM

Barb,

No reason that curcumin impact would be different for other TKIs, but I would encourage you to focus on your choice of TKI in the short term. I have used Gleevec, Tasigna and Sprycel. My side effects are very minor on Sprycel, but everyone is different. I too suffered from brain fog and the GI issues on Gleevec. Do not need a mutation test to switch from Gleevec to Tasigna or Sprycel, insurance may approve a change just to avoid side effects. General consensus (once again everyone is different) is that the switch from Gleevec should be to Sprycel rather than Tasigna. My results agree with this consensus both from a BCR/ABL reduction and a side-effect reduction. Also Tasigna is a pain with the fasting and 12 hour spacing between doses.



#12 scuba

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Posted 15 March 2013 - 11:42 AM

I was started on Gleevec 400mg. I had the usual side affects (muscle cramping, nausea, brain fog), but I considered them minor. I was told to reduce dosage (from 400 to 300mg) to handle Gleevec induced myelosuppression, but FISH started to go back up. I was advised to take Neupogen shots so they could increase my Gleevec dose to 800mg. It was at that point I decided to take control of my own care and get a new doctor who was an EXPERT researcher in the field and not just an regular Oncologist. And no way was I going to take Neupogen (could stimulate the cancer) unless it was a last resort. My first doctor was a nice guy, but only had two CML patients in his entire career. He does things by the book (I can't blame him). And at that time Sprycel & Tasigna were not approved for first line therapy.

I switched to Dr. Cortes who told me he would have rather me start on Tasigna rather than Gleevec first. I told him I wanted to start with Sprycel as my second drug as Tasigna is similar to Gleevec and only binds tighter to the ATP slot whereas Sprycel works differently and higher up the cell differentiation hierarchy. He agreed. I started 70mg. Sprycel (due to prior myelosuppression) and had a tough time with blood counts (minimal side affects, however). Up and down - lots of drug breaks. My FISH hardly budged. It was around that time I started taking Curcumin. My FISH started to respond - while I was on a drug break! It went down - not much but it went down even though I had no TKI in my blood. As my blood normalized (somewhat), I was re-started on 20mg. Sprycel. And that's when my FISH/PCR plummeted. Over 7 months with Curcumin + sprycel, my FISH first went to zero and my PCR approached MMR. A few months later my PCR went to 0.1%.  I have dropped two logs since then (0.001), but still have been unable to get to PCRU (I seem to bounce around being "detectable") although I am waiting on results of my latest test.

I have asked Dr. Cortes if I can increase my dose to 40mg. since my blood counts are normal now (except for red blood cells) in order to really drive down the PCR to below detection. And he said no. I was pretty emphatic in wanting to increase to 40mg. for that extra "punch". And Cortes said NO. He told me that lower is better if it works. And that trend is what is important not necessarily speed. I told him, I'm stuck at this barely detectable and I want it to decrease further. He told me I'm doing great - that PCR is not that important when it gets low. It's FISH (cytogenetics) he cares about. And PCR matters only if it starts to rise more than a log or two.

And so I am on Dasatinib - 20mg. + 8grams Curcumin. Sprycel is a good drug. It works for me, it may work for you. But I also feel that if it works - it will work at low dose. It is powerful. It only lasts in the body for 5 or so hours (half-life). And it has that kind of impact, at least in my case.


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"


#13 Barb@Anderson

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Posted 15 March 2013 - 07:55 PM

akjones and scuba,..... thanks for the information.  It seems logical that if I'm feeling so bad with side effects from Gleevec that another med is in order.   Sprycel seems to be the one of choice.  I will talk to my onc when I go back and ask to be changed.  These side effects from Gleevec are not getting any better.  If anything I am getting worse.  Also, I am going to get the curcumin and start on it.  Today was my birthday and also the day that I was to take the 400 mg of Gleevec.  My kids planned an evening out for me with dinner and celebrating.  While getting dressed, I thought I'm not going to even make it to my own birthday party.  I did manage to finally get ready and eventually started feeling better after we arrived at the restaurant.  I have always been an upbeat and active person.  I don't like being the way i am now. The brain fog is so bad sometime I believe i am getting dementia.  Not really but it's scary none the less.  Thanks again for the comments and suggestions.  I really do get encouraged when I read about the results attained from all of you that have reached  PCRU and MMR. 



#14 Susan61

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Posted 15 March 2013 - 08:29 PM

HAPPY BIRTHDAY BARBARA:  You will get to enjoy many  more Birthdays in the years ahead, even if you did not feel up to celebrating this one.  So sorry the Gleevec is not agreeing with you.  I do get the Brain Fog a lot, but sometimes I think maybe its just my age or overload with so much on my mind all the time.  I have been on Gleevec for over 12 years now, and I guess it depends on the person and how they handle it.  With me I had no other options, therefore, I made it work for me.  The side effects can be troublesome at times, like foot cramps well I am driving. Weight Gain that has gotten out of control.  A lot of the side effects have calmed down that I had in the beginning.  I feel I can live with what I get, but everyone is different in how they absorb these drugs.

I know Curcumin can be a blood thinner, and I stay away from it because of my low platelets.  Just check with your doctor before you add anything to your regular medications.

I have so many other issues going on right now with my health, but I just stop to think that at least I am still here 14 years since Diagnosis.  I Thank God Every Morning when I wake up, and again before I go to sleep.  I think that is where I get my strength from. I have been at PCRU now for 10years with the Gleevec.

I hope you do well, even if you have to switch to Sprycel or another TKI.

Take Care and God Bless

Susan



#15 Barb@Anderson

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Posted 16 March 2013 - 03:05 AM

Thanks Susan.  You are always so encouraging.  I too thank God every morning that I wake up and again when I go to bed.  I have been truly blessed with children, grandchildren and siblings that are always there for me.  Have a wonderful day in the Lord, Barb                                                                                                                                                                                                                                                                                                                     






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