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Hi everyone! In September, my oncologist told me I had finally (dx in March 2017) achieved MMR (I believe 3 logs). At today's appointment, he said I was still MMR, but he doesn't think I'll ever be able to potentially get off Imatinib because I simply respond very slowly. Today's results weren't very different than September's results. My question is: I remember reading on this forum some time back (I don't remember who had made the comment) that curcumin supplements with pepper were great to help CML results. Does anyone know how many mg I should take or the brand to buy? I want to do anything that will help drive my results deeper.
Thank you,
Sonia

Hi there 

I’m not an expert on curcumin by any means, but I take 6-8g per day intermittently throughout the day to spread it out.  I found a really useful thread here that may help (link below).  

https://cmlsupport.org.uk/thread/11989/curcumin-nitty-gritty

 

good luck! 

 

 

It takes many - many - of us two years to get to MMR.  And many of us still go on to reach the .00's.  But, if you're in a hurry, a 2G TKI will probably get you there faster.  You might consider a switch to Sprycel, as Tasigna is very like Gleevec.  I would like to say the jury is still out on curcumin's safety and effectiveness but, unfortunately, there has been no trial.  I would like to share Scuba's enthusiasm, but I can't until there are proper studies in CML patients.  

Many people have plateaus even for an extended period of time. It’s too early to know if you’ll be able to come off meds. The guidelines are min 2 years at a deep level of response it doesn’t mention if you’re a slow responder and finally reach MMR 4/5 that you can’t go for TFR. It can take many many years to get to 4/5. Never say never but I’d add TFR isn’t a realistic goal for TKI anyway.

I personally don’t think there is enough evidence to warrant taking Curcumin otherwise surely the experts would be saying take it. I am taking Tasigna which can cause heart issues and I also read Curcumin can also play around with the heart rhythm etc so I decided I won’t take it. But each their own and if it didn’t mess with the heart I’d probably take them also. I do believe having a balanced diet can help contrary to the evidence that suggests diet cannot help cancer but I don’t believe that nonsense. Everything comes from the ground in some way so why wouldn’t it help.

https://www.ncbi.nlm.nih.gov/pubmed/19233493

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6369319/ (no effect on heart rhythm)

https://www.webmd.com/heart-disease/news/20090720/curcumin-may-prevent-c...

https://www.newsmax.com/Health/RussellBlaylockMD/arrhythmia-heart-attack... (last paragraph)

Note on "experts": Curcumin is not patentable. It will not likely be part of expensive clinical trials necessary to prove one way or another. Experts rely on clinical trial evidence. The rest of us have to read, learn and rely on Ph.D's who study these phyto-chemicals so they can publish. Curcumin has a lot going for it based on this research.

Thank you all for your responses. I just finally 'crossed over' into the 3 log zone and Monday's results weren't different than September's. The reason I wanted to try curcumin and potentially drive my numbers deeper is so that I can 'comfortably' be in the safe zone and not potentially lose my response (since I am borderline 3 logs). I read the thread posted above. Scuba, do you still recomment/suggest the same brand and dosage of curcumin?
Thsnk you all for your help ❤

I continue to take C3 complex version of Curcumin.

Thank you Scuba!

I bought some Curcumin with pepper from Amazon and it has a heart warning on the label and because Tasigna also has a heart warning I was reluctant to take it just in case it caused issues or made things worse. I really wanted to take it but that made me worried and hence my message.

What you said about experts and patents also makes prefect sense. What a lovely world we live in hey!

I know you've answered this before - but what levels of curicumin (and D3 for that matter) are you currently taking? @scuba

I take 5,000 IU's vitamin D3 one day; 10,000 IU's the next day in winter.

In spring I switch over to just 5,000 IU's every day until fall.

The above is calibrated by vitamin D tests which either extends or delays when I switch. I do this in order to maintain blood levels around 60-70 ng/ml.

I take 2 grams a day of C3 Curcumin with pepper (helps with absorption).

BUT - shortly after I was diagnosed and dealing with myelosuppression and imatinib not working for me, I began taking 8 grams per day*. I only lowered my Curcumin dose when I achieved PCRU a few years ago. And since no change, I keep it at 2 grams. I find 2 grams per day gives me the "aspirin" effect in that my joints feel great (no arthritis). I discovered Curcumin because of CML, but I now take Curcumin because of its anti-inflammatory effects which I can feel. If my CML were "magically" cured in a known way (as opposed to "we think you are cured"), I would still take Curcumin. It's just good for you - like a fine scotch and cigar! .... well maybe not, but close eh?

(* what I noticed after taking 8 grams of Curcumin in my early days following diagnosis is that my PCR did not change at all - it even dropped a bit when I had to stop therapy due to myelosuppression. In fact, it took months and months for my blood counts to recover - and all that time I was off drug with no PCR change. I attribute this (speculation) to Curcumin's reported down regulating effect on CML's growth and the NF-κB pathway.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323234/pdf/oncotarget-07-6...)

Some caution on Curcumin - it is a strong binding agent with metals such as iron, magnesium and others. Best not to take Curcumin at the same time you are eating food rich in iron (meat, spinach, etc.). I take Curcumin on its own in the morning or with food that has fat (like Gouda cheese:

https://www.cureus.com/articles/16779-iron-deficiency-anemia-due-to-high...)