tumeric

[Grandmajoanie]

hi everyone,

Just a quick question. Does anyone here take tumeric? I’ve been reading about all the

anti inflammatory benefits and wondering if this is ok to take with cll? Also how much?

Thank you Grandma Joanie

[Panz]

Yes, I have taken it for years and have been approved when I was taking Imbruvica an now that I am taking Calquence. I take it almost daily. It is a soft gel tablet called Curcumin EX Plus. 500mg. The number of infections have been reduced.

Panz 🙏🙂💕☘️🌈

[Grandmajoanie in reply to Panz]

Thank you for that information. I appreciate it very much.GM

[JLJC in reply to Panz]

I also take turmeric golden paste everyday. I make a mason jar of it every month with organic turmeric powder, coconut oil, black pepper, water and honey. It is great in a cup of warm milk and I put in my shakes. It is an acquired taste so taking the gel caps like Panz might be more palatable than the paste. I have come to like the taste though 😳 I am a believer in turmeric!

[Donnamccll in reply to JLJC]

Please provide the recipe. I would like to try it!

[JLJC in reply to Donnamccll]

I thought I posted the recipe but I don’t see it. Did you get it by chance?

[Dragonfly2007 in reply to JLJC]

Yes, please can you provide the receipt. Thank you!😀

[DawnRedwood in reply to Panz]

I take Imbruvica and was told I couldn't take tumeric.

[janvog in reply to DawnRedwood]

I faintly remember something similar...

[Richard_TX]

I've been taking Turmeric for about 5 years. Be careful what you buy because a lot of Turmeric contains very little Curcuminoids. Curcuminoids is why you take Turmeric so look for a brand that contains a high % of Curcuminoids. Below is a photo of what I order from Amazon. Maybe others will have a suggestion on a better brand. I take about 8- 10 capsules per day.

Turmeric

[Grandmajoanie in reply to Richard_TX]

Thank you I will remember that. So nice of you to answer.GM

[GolfinIndiana in reply to Richard_TX]

Thank you. I’ve been taking turmeric for a number of years did not understand the importance of that curcuminoids. I did some looking online at reputable sources, and validated curcuminoid importance in a lot of aspects. I’m switching my brand. Appreciate your input.

[GolfinIndiana in reply to Richard_TX]

Thank you. I’ve been taking tumeric for a number of years I did not know the importance of the curcuminoids. I looked online at several reputable sources and validated the curcuminoid importance in a lot of aspects. I’m switching my brand. I appreciate your input.

[AussieNeil Partner Administrator]

There's an extensive entry on turmeric in the Memorial Sloane Kettering Cancer Center Integrative Medicine database

mskcc.org/cancer-care/integ... with some encouraging information, such as "It was also found to be safe and as effective as paracetamol (82) or a non-steroidal anti-inflammatory drug (18) for the treatment of osteoarthritis of the knee, but did not affect knee effusion-synovitis or cartilage composition (83).

Supplementation with curcumin was also found beneficial against osteoarthritis of knee (87) and sarcopenia in older subjects (84)."

The Clinical Summary concludes "Overall, the development of turmeric for clinical use needs further investigation due to its inherent poor absorption, rapid metabolism, complex mechanistic profile, and largely preclinical data." Note also that it may interfere with drugs, as "curcumin is known to interfere with cytochrome P450 enzymes (26) (27) and may interact with chemotherapy drugs like cyclophosphamide and doxorubicin (28)" (Cyclophosphamide is the 'C' in FCR).

There has been considerable interest in using turmeric to slow CLL progression after encouraging in vitro experiments (that is, observing that curcumin from the turmeric killed CLL cells in a test tube). Unfortunately, as is often the case, it proved not to have an effect in a clinical trial. I think the rough figure of guidance is that for every thousand encouraging in vitro results, you are likely to see one encouraging result in human in vivo trials, that is people actually taking the substance. It's tough getting a high enough blood serum concentration without causing adverse events.

Curcumin is especially challenging in this regard. It's difficult to absorb through the digestive system and is rapidly broken down by the liver. Various formulations have been developed to improve absorption, by up to 80x or so, typically by mixing it with black pepper or something fatty. Unfortunately, you still have the liver rapidly clearing it from the blood stream. CLL cells in the nodes also establish a protective microenvironment, surround themselves with nurse cells, which protect the CLL cells from undergoing apoptosis.

As I explain here, I consider the human trial protocol used the statistical property of "Regression toward the mean", to increase the changes of "observing" a benefit, by choosing "responders" who were likely to have their lymphocyte count drop. Even so, it wasn't that encouraging, with only 3 of the 21 patients having a lower absolute lymphocyte count at the end of the trial than at the beginning, which could be equally explainable by chance.

healthunlocked.com/cllsuppo...

This is why good clinical trials have a placebo arm, randomly assign participants into the trial arms and blind or double blind the participants.

Neil

[Grandmajoanie in reply to AussieNeil]

Thank you.I was thinking about taking it because of its inflammatory effects.

Arthritis in particular. GM

[Mandy56 in reply to Grandmajoanie]

I started taking it last year and eating a cracker with black pepper ground on it after, as apparently the pepper makes turmeric 2000 times more effective. It made a big difference to the arthritis in my knees and wrists. At least I think it is the turmeric. I haven’t changed anything else in my diet. There is a wonderful book called How Not to Die by Dr Michael Gregor. All the sale proceeds go back into his research and updates. It is fascinating the effect various foods can have on us.

[ClassyLady3 in reply to AussieNeil]

Would Tumeric still affect the kidneys like NSAIDS?

[AussieNeil Partner Administrator in reply to ClassyLady3]

Read the MSKCC reference. mskcc.org/cancer-care/integ...

It does state specifically with respect to kidneys "Patients predisposed to kidney stone formation (50) should consult their physicians before using turmeric supplements."

Neil

[Hidden in reply to AussieNeil]

Exactly. Correlation is not causation. The reason that Turmeric fires up the immune system is that it is a plant toxin. The body is firing up its natural defenses to rid itself of this phytotoxin. Turmeric is also high in Oxylates, so by consuming it you are setting yourself up for kidney stones and chronic joint inflammation.

[Smakwater in reply to AussieNeil]

You put a lot of effort into bringing us credible source information Neil.

Can't thank you enough!

JM

[Edalv in reply to AussieNeil]

Exactly, it must be taken with black pepper and some fat. I like to put it on my wild salmon and also avocado toast with olive oil… I also take it with an omega-3 pill in supplement form. Just be careful not to go over the recommend dosage if you bleed easily…

[annabelle63]

Curcumin Taking this for 6 years

[lindalou5]

I just ordered some earlier today, so it was nice to see this post! I have no expectations of it helping my CLL, but was more curious if it would be bad to take while treating the CLL. I have very bad osteoarthritis, and without the benefits of aspirin or other blood thinning meds for inflammation, it was just something I wanted to try. Hope it works!Thanks to Neil for his information. Always helpful

[Pin57]

Hi grandmajoanie - Started turmeric a few years ago about same time dx with CLL n like you it wasn’t for CLL but to help with arthritis in my hands… and it has! No more waking up in morning with really stiff achy fingers.

My PCP recommended I try it and my CLL specialist is on-board taking it. I’m in W&W, early stage 0 CLL n no treatments yet.

500 mg once a day works for me.

Suggest talk with your doc on use and dose as everyone is unique in their medical situation, so what works for one may or may not be right for you.

Hope you find arthritis relief!

[al444]

I do

[Soultouch]

Hello allI have been using corcumin supplements for last 2 years now and have seen some promising results in infections, liver results etc. I had taken prior approval from my Haematologist and he studied the supplement and approved the same (also approved by FDA). Don’t know whether it helps my CLL or not but something is better than nothing.

As far as interactions are concerned, I wonder if there is any single element which has been left not to interact with our CLL medications

[dougstalbans]

I have used for years but then found that in my case it's not ideal as I have low platelets and it is a factor in this.

[Accordion]

Agree with dougstalbans. It has a blood thinning component. So if you have low platelets, maybe you have to be careful. I avoid it (even in food) since I have serious problems with low platelets, ITP. Googled a lot to find something antiinflammatory, but no. Didn’t.Christina

[DawnRedwood in reply to Accordion]

I would love to find something for arthritis pain, but I can't take ANY anti-inflammatories because of taking Imbruvica. The only pain killer I can take is Tylenol, and it doesn't work very well at all. Being in pain most of the day is not good.

[Accordion in reply to DawnRedwood]

It is so tiresome to have pain! Maybe you are high on platelets? On Bruvica or not. You can ask your hemathologist if you are allowed to try a small dose curcumin. My circumstaces are exeptional since I have ITP and very unreliable thrombocytes, sometimes too scary low. So then I also avoid blueberries, curcumin, red berries and all kinds of healthy food😏Maybe stupid, but psychological it helps me to think I can maybe control the uncontrollable.

Best luck!

Christina

[blowinginthewind in reply to Accordion]

I have replied to DawnRedwood about pain management, it might be relevant to you. Liz P xxx

[Accordion in reply to blowinginthewind]

Interesting with cocoa! I luckily dont have pain, just serious platelet and heart problems.....

[blowinginthewind in reply to DawnRedwood]

Hi Dawn, I have chronic pain after an accident some years ago - all unconnected to my CLL. I saw a pain management consultant, a very reputable one. He suggested that if I have a very small piece of very high cocoa content chocolate with each dose of painkiller, it will boost the endorphins produced, and lessened the pain. I started out on 70% cocoa content, but started to enjoy it So I now have 85% cocoa content. a 90g bar lasts me a couple of days. And Yes it does help.

I hope it helps you

Liz xx

[loran6t8]

Hi Yes I take it in a drink form. Fresh is better but if I can’t get that I will use powder, along with ginger, nutmeg, cinnamon and a pinch of black pepper. I add this to warm oat/cashew/almond milk and then finish off with either a splash of honey or maple syrup.

It works for me - I found it in the book ‘my sexy diet’

If you try it I’d be interested in knowing if you find it beneficial

Thanks

Loran

[Livingwith67]

I use this high quality curcumin mix, as this is strong for my sensitive stomach, I take half a teaspoon then gradually add more up to two teaspoons a day. If I can’t stomach this I use a capsule instead. Whatever you use needs to be taken with black pepper (usually already part of the capsule) and ginger added helps too.

Earth signature tin

[Livingwith67]

Had to do two posts to add two pictures, these are the capsules I use if I can’t stomach the fresh

Capsules

[stevesmith1964]

Yep, everyday with a peppercorn to help absorption

[sweetsue49]

I was diagnosed with CLL in 2009 and still have no symptoms so am not taking any meds. I do take supplements including turmeric 2,000 mg of Kirkland Costco brand. It seems to work pretty well to keep any body pain down. Personally I encourage my friends to take it.

[Bluemerlegirl]

This has been interesting to read through this post. I started taking Turmeric several months ago. I honestly don’t know if it does anything for me or not. I’ve sometimes questioned it, but I continue to take it. I started taking it at the same time I started taking Magnesium and B12. I had a lot of leg pain, and a couple of weeks after starting them, the pain started subsiding. I am good about taking all of them, everyday, but I have since noticed the pain beginning to return. I know my B12 levels were extremely low prior to taking supplements. I’m just not sure if it is just the B12 and Mag that has helped with the pain, or the Turmeric as well. I’m not sure there is a way to know, so I’ll just keep taking all of them.

[Pin57 in reply to Bluemerlegirl]

I like you Blue take Mag n Tumeric (no B12)… but for me, taking Mag before I started Turmeric, it was the Mag definitely that stopped cold the major night shin n feet cramps that bolted me out of bed. Wife thought there were snakes making me fly out of our bed ! Lol

Good luck and hoping your CLL journey is going as well as it can.

Take care.

[lemonbutterfly in reply to Pin57]

That's interesting, I've been getting foot cramps for quite a while, I have had leg cramps twice in the night. I didn't make a connection to CLL, do you know if it is connected?

[AussieNeil Partner Administrator in reply to lemonbutterfly]

Painful cramps are commonly reported on CLL, but it's not known why. I was having leap out of bed cramps nearly every day. Daily magnesium tablets helped significantly. The cramps gradually faded when I started treatment and I haven't had a bad cramp now for over 2 years. Given I reached uMRD with treatment, I think there is definitely a link.

Neil

[Pin57 in reply to lemonbutterfly]

I agree with AussieNeil that there is a link. Nobody seems to know why but taking Mag seems to help quell the night cramps for some of us with CLL.

[Donnamccll]

I currently take it. But after reading the responses to your post, I'm going to increase my intake.v

[Lavinia-Blue]

Supplements could/do contain contaminants, my understanding, so one needs to be mindful when using them in high doses and over long periods of time. Turmeric, I believe, is high in oxalates (kidney stone former).

[prockwo]

I've been taking Turmeric capsules for seven years and I'm not on any meds yet.

[Astro617]

Turmeric has some great benefits and really helps me with joint pain. Unfortunately , it also seems to thin my blood a great deal so I have taken to using it topically (therapeutic grade essential oil) instead of ingesting it. Turmeric can be high in lead contamination so that is something to check for.

[SofiaDeo]

I mix a teaspoonful/5ml in every batch of oatmeal I cook, which is 8 cups/2L water to 2c/500ml steel cut oats. 16 servings.

[SeymourB]

Grandmajoanie -

The independent review of turmeric products for potency, contamination, and safety at:

consumerlab.com/reviews/tur...

(subscription required), noted some negative effects have been reported in case reports for people who have underlying conditions:

Turmeric can stimulate gall-bladder contractions and cause pain in people who have gallstones, although it doesn't contribute to gallstones or gallbladder diseases. This happened to me, and I had my gallbladder removed as a result. The pain continued for days, because the stones inflammed the gallbladder and duct. I also had itchiness and elevated liver enzymes.

Long term use might adversely affect the liver in some people, especially women. Symptoms were elevated liver enzymes or dark urine, itching, and nausea (classic liver symptoms).

Long term use may lead to kidney stones in people predisposed to such stones. We're all a little different in the shape of our organs, and balance of minerals and other elements.

So, I think it's good to investigate any abdominal pain or change in liver enzymes as you test any substance. Gall bladder pain can be an upper back pain, radiating to the right.

=seymour=

References that were not paywalled for me:

pubmed.ncbi.nlm.nih.gov/124...

Effect of different curcumin dosages on human gall bladder

hindawi.com/journals/crigm/...

Drug Induced Liver Injury Attributed to a Curcumin Supplement

casereports.bmj.com/content...

Drug-induced autoimmune hepatitis associated with turmeric dietary supplement use

pubmed.ncbi.nlm.nih.gov/326...

Acute liver injury following turmeric use in Tuscany: An analysis of the Italian Phytovigilance database and systematic review of case reports

academic.oup.com/ajcn/artic...

Effect of cinnamon and turmeric on urinary oxalate excretion, plasma lipids, and plasma glucose in healthy subjects

[Grandmajoanie in reply to SeymourB]

Well thank you, and thanks to every one who answered me. As far as anti inflammatories are concerned I am sensitive to aspirin, Ibuprofen and I can only take naproxen once in a while because they all cause Black and blue marks so taking that into consideration I don’t think The tumeric curcumin would be right for me. However I will ask the oncologist about it. I’m 78 and have been on watch and wait since I was 70.

My labs are still good, I’m holding steady,just the usual aches and pains.

My grateful thanks. GJ

[Dragonfly2007]

I add organic turmeric powder to olive oil and add black pepper as a dressing for what ever I am eating. Not sure of the benefit, however, there is something to be said for the placebo effect!

[mrsjsmith in reply to Dragonfly2007]

Sounds delicious. I will try that.

Colette

[mholben]

Yes…for going on three years. Both my oncologist and primary physicians are fine with it. It did away with my knee pain when doing my Pilates workouts.