I usually reserve these kinds of publications for our CML facebook page (link at bottom of page) but I thought this was an interesting (very) publication in the BMJ about daily supplementation with curcumin by a myeloma patient who has achieved astounding results-
http://casereports.bmj.com/content/2017/bcr-2016-218148.full
Thank you for posting this Sandy.
Scuba from the LLS forum also swears by Curcumin and has posted an article or two about it.
My BCR ABL level has plateaued at MMR3.5 (0.011-0.019 IS) for over a year now. I would like to add daily Curcumin to see if it might help lower the BCR ABL further.
My only concern is working out when to take the Curcumin to ensure it doesn't interfere with anything else I take. I especially don't want anything to interfere with the Sprycel action. I take Thyroxine half an hour before eating and drinking in the morning, Sprycel with coffee and breakfast and enalapril in the evening before bed. I guess the middle of the day is probably the safest time but I often try to supplement with magnesium or iron then. Feeling like a bit of a pill-popper!
If anyone has any advice on when and how to fit all this stuff in without jeopardising the Sprycel effect especially I would be very grateful to hear it :)
I followed some of Scubas advice and started taking Turmeric/Curcumin. This seems to have helped my latest labs were spot on, red blood cell, hemoglobin, hematocrit and MCH were at normal levels, first time in along time, take it @ 11AM and Sprycel @ 2PM.
I take four to six grams of Curcumin every day (C3 complex with piperine (pepper)). As I transitioned from Gleevec to Sprycel I would take up to 8 grams per day.
I split the dose first thing in the morning (2 grams) with a glass of water and then take another two later in the day usually after lunch or dinner and then when I retire. Curcumin is a polyphenol and has little interaction with other supplements and drugs. The piperine in the complex I take could enhance absorption of some drugs, so it is best to avoid combining the two at the same time - unless - you want enhanced absorption. I take Curucmin with Sprycel at the same time - no issues. In fact, Curcumin + sprycel work together (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162943/).
What I experienced taking curcumin are two main benefits:
1. Arthritis pain - joint pain in general is gone. Arthritis runs in my family, but after I started Curcumin, joint pain disappeared. Even if I were to be cured of CML, I would continue taking Curcumin.
2. PCR levels fell more quickly after starting Curcumin and then during drug breaks because of myelosuppression induced by Sprycel, Curcumin prevented rapid expansion of my leukemic cell counts.
I went three months without any TKI waiting for my counts to recover. Normally this would take a week for most patients. Curcumin suppresses the pathways for rapid clonal expansion.
Curcumin is not a cure by itself. But it does interfere with Leukemia cell division and slow it down. I take Curcumin so I don't have to take full dose Sprycel or even half dose. I feel (opinion) that Curcumin enables me to get a better response with a much lower dose Sprcyel than I otherwise would be able to achieve without it.
And it is good for you overall. Turmeric/Curcumin is a root similar to other roots. It has a lot of properties (cox-2 inhibitor) that help blood flow, skin health and other good things for the body.
Thanks scuba
It's good to hear about the benefits you've had and how you space out your curcumin through the day. I might take some in the morning with my Sprycel too.
The pharmacist mentioned that people taking blood thinners should avoid curcumin and suggested I get a full blood count after about a month of starting curcumin to make sure everything looked ok (including platelets).
I was also interested to find out (by Googling) that curcumin is being investigated for use in diabetic nephropathy (kidney disease). Seems it may have a similar renoprotective effect to ACE inhibitors.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5282455/
https://www.sciencedirect.com/science/article/pii/S135964461300127X
On a side note , do you know its visible on facebook when I join the group??
I would like to join but I dont wnat people who view my profile being able to see that im in the cml fb group
Eva,
The CML-UK Facebook group (and all the other CML groups I know of) is a private group. Nobody will know you are a member, or see your posts / comments unless they are also a member.
EDIT: I was wrong - please see my follow-up post below.
David.
Hi David,
Do you mean the group is private or secret?
Unless it's a secret group, anyone can see I'm in the group.
https://m.facebook.com/help/220336891328465?helpref=about_content
Apologies for the threadjacking sandy
Eva
Hi scuba I was diagnosed 5months ago and not taken any supplements at all. I was given sprycell 100 Mgs and seen a quick response. (Fish at 3 months no Phil+ detected and pcr .19)I am very interested in taking curcumin now but do not know which one to buy. Do you recommend any on amazon? Also any serious side effects from this supplement?
Congratulations on your quick response on sprycel. When your PCR falls below 0.01% ask your doctor about reducing dose so you minimize the chance of pleural effusions or other side effects.
I take C3 curcumin with 5 mg piperine (black pepper). It is made by Sabinsa corp and marketed under several labels. Just do a search for C3 complex curcumin and you should find it.
Hi Scuba
do you have any information about curcumin with imatinib? is it ok to take curcumin when you are on imatinib?
thank you
In brief: turmeric is the plant. Curcumin is a compound (along with several other hundreds) of that plant, about 2-6% of the plant. In a way, curcumin represents the "power" of turmeric.
You can choose :
1. Some use large quantities of turmeric powder mixed with oil and pepper for absorption (a few tablespoons a day). There are arguments that the other hundreds of turmeric components have healing properties acting together synergistically. This is the "powder" you refer to.
2. Others only use curcumin extracted as curcumin supplements: capsules, gel, tablets, extract-extract. There are about 10-12 important processes for producing curcumin supplements and some hundreds of brands around the world.
One capsule has, depending on the brand, between 250-750 milligrams .
For CML, I think it takes strong supplements that contain 95% curcumin (or other improved processes) administered in quantities of at least 8 grams per day. The safe dose is 12 grams per day. The effect is very good, but you have to try to find the dose that suits you.
Do you have other questions ?....
Hi Sandy
Quick question - does taking tumeric along with tasigna causes myelosupression or low wbc?
Is it safe to consume turmeric on tasigna treatment
