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Curcumin & Vitamin D - interesting research results (from ASH)

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https://www.curetoday.com/articles/curcumin-and-vitamin-d-treatment-may-...

Although the above research article describes this combo for CLL and SLL - the mechanisms of action could apply to CML as well.

I am a long term user of Curcumin and vitamin D and credit both with my 'sudden' improved response and low dose TKI effectiveness.

 

Hey Scuba

Thats an interesting read. I recently bought https://www.amazon.co.uk/gp/aw/d/B00FJ9FNL8/ref=mp_s_a_1_18_a_it?ie=UTF8&qid=1544220900&sr=8-18&keywords=curcumin

I am yet to take it. I am paranoid it’ll effect my meds Tasigna In a negative way don’t ask me why just super paranoid. I am only 7 months into treatment with my last PCR of 0.7%

Does this Curcumin look ok to you? I realise you’re not a doctor :-) do you have links to the Curcumin, Magnesium and D that you take?

Thanks

Alex

Hi All, I have started taking Curcumin and Vitamin D .Everyone seems to be on different doses .I am one year in and on 400 mg Imatinib.What are the recommended doses ,can anyone help please ,thanks ,Denise.

Hi Alex,

The Curcumin you pictured is the same formulation I take (C3 complex w/ bioperine (which is pepper)). It will not affect your Tasigna's effectiveness and may very well enhance it. In early years when my PCR > 0.1% I took upwards of 8 grams per day (split in two doses). Now I take between 2 and 4 grams per day as maintenance. Curcumin's effectiveness is dose dependent. More is better when it comes to this compound, but only up to 8 grams. My own experience is it slows CML significantly. It is not a cure, but adjuvent therapay to go along with TKI. My goal is to strop taking my TKI (sprycel) with expectation that Curcumin (which is a naturally occurring spice) will help keep me PCRU.

It's noteworthy that CML incidence rates in India are less than that in the western world. People from India tend to eat a lot of curry (which contains Turmeric/Curcumin).

I take magneisum taurate: https://www.amazon.com/Cardiovascular-Research-EFM-MGT180X2-Capsules-Mag...

Andy any brand of vitamin D3 which is reputable is fine.

(Regarding Curcumin - I tend to take Curcumin lately more for its anti-inflammation and heart benefits than for my CML. It's great to take it following a night with friends after having a bit too much scotch. It's better than aspirin! My skin looks years younger (no spots - amazing). Curcumin is just a good thing to add to your diet. If I was magically - truly cured of CML - I would still continue to take Curcumin.)

(note: I only drink good scotch)

 

Interesting research, but I did not see a reference to any control group in the study - did I miss something?

Denise,

I take 500 mg magnesium taurate per day split in two doses - first thing in the morning (empty stomach) and just before retiring. Full glass of water.

I take 5,000 IU's per day vitamin D3 in summer (with food that has fat like an avocado) and increase my dose to 10,000 IU's one day, 5,000 the next in winter. I find this dose for me keeps me around 70 ng/ml. Everyone is different, you may find you need less or more vitamin D to maintain ideal blood levels. I test my vitamin D blood level twice a year, but will probably decrease that to once a year now that I know my body's response.

You should not take more than 10,000 IU's on any given day.

Also - unless you eat a lot of fermented bacteria rich food - take vitamin K2 at the same time as D3. They work together and help maintain calcium balance in the body. K2 removes calcium from soft tissue (using vitamin D) and vitamin D stores calcium in bone (using vitamin K2). I take 200mcg vitamin K2 (aka menanquinone; MK-7) and I eat Japanese Natto (an acquired taste -use lots of mustard).

Brilliant thank you Scuba.

I feel far less paranoid about taking it now. I was just concerned it may “Intefere” with my response so far. This illness certainly makes one extra paranoid. Every ache/pain or new spot certainly makes you worry. Sometimes I worry more over the tablet symptoms than the illness itself which is ironic. I am telling myself this does get better with time. I’ve had some good months however the last month mentally it’s been pretty rough. I’ll get through I always do. 

Thanks again for taking the time to respond!

All the best

Alex

I asked Mayo Clinic onc and pharmacology people about Curcumin. I was interested because of osteoarthritis. I am on Sprycel, dasatinib. They strongly advised against it because it does something to the blood. Not good with dasatinib.  Do not take.

I have been reading for months the enthusiastic approval of this supplement. My only advice is to check with your own Onc and pharmacologist.  I cannot advise, only comment on what I was told.  Gitel, who is an old lady.

Gitel,

Yet again, so-called medical people mis-informed (and I am being kind).

Whoever told you that at Mayo Clinic is very wrong. I hope it wasn't a doctor.

Curcumin is naturally occurring and has properties similar to aspirin except more mild.

It can act as a blood thinner (again - very mild) which guards against heart attack and stroke - like aspirin), but a natural one. It is EXCELLENT with dasatinib:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3162943/

I have been taking Curcumin for over 5 years along with Dasatnib (20 mg). I am PCRU, no side effects I can feel and even as important - no arthritis that I used to have. If you have osteoarthritis, Curcumin is excellent to take.

(whoever told you Curcumin should not be taken with dasatinib at May Clinic should be fired).

Hi Scuba ,thank you so much for your information I will get the other supplements you have suggested .Cheers ,Keep well .

Hi Scuba

first and foremost, I wanted to sincerely thank you for all the great advice, reference articles and knowledge you’ve shared on this forum. I’ve greatly benefited from it and I hope I can contribute to share experiences as well.

this year has been tough for me. Almost 5 years of PCRU on Sprycel, then bouts of pleural effusions. Switched to  Bosutinib but had another PE - perhaps cross-toxicity. Diagnosed with significant PAH and currently on medication. Due to all such complexities I’ve been off of TKIs for about 6 to 8 weeks. Started taking turmeric several weeks ago. PCR from Oct 26 came back as undetected (no TKI). Unfortunately Nov 21 came back at 0.1 percent. Going in for labs next week. I’m on about 8g turmeric. Btw - been feeling great for last couple of weeks - clear lungs, active, exercising.

i will keep everyone up to speed. Been a frustrating year and hoping things turn around 

thanks 

Chigi,

I hope your most recent PCR was a "blip" which can happen given PCR's methodology. At 0.1% you are still MMR (major molecular remission). Your next test result will guide you on what to do. If your PCR drops back below 0.1% or even better goes "undetected", you are in a good place. You can continue to remain off drug (all TKI's) and track your PCR monthly. As long as your PCR is at or below 0.1%, you are "o.k.". to continue off drug.

Make sure your vitamin D level is high normal (ideally ~ 60-70 ng/ml) so your immune system is energized. Curcumin should slow down the CML if it is returning. It will buy you time.

Posted this ASH abstract on our homepage...

Tim Hughes et al (Adelaide) have been/are studying why some may be able to achieve stable TFR while others experience a molecular relapse when weeks or months after stopping TKi therapy. This article is interesting and outlines why this might be.

Re: Vit D3/K2.

Personally, I have benefited immeasurably since I started taking a D3 (with K2) daily supplement some months ago. I am less cautious than others and take between 12000 and 16000 IU of D3/K2 combo per day - I have noticed a marked increase in energy and muscle strength, plus an excellent effect on general mood.

D3 toxicity? The real risk zone starts above 150 ng/ml although some opinions differ regarding the reality of the risk of D3 toxicity.... Above 300, there can be an increase in the calcium levels in the blood, which is why you should take K2 alongside D3. 

I aim to maintain my D3 level at 80-100 ng/ml and test via my clinic once a year. ***Please note for UK members, if your clinic does not test your D3 levels (although they should if you ask), there is a testing lab used by Birmingham NHS that will send you a home testing kit for £29.95 or so. You can find that on Amazon.

You should factor in that UK labs report results measured as nMOL/Lt (nanomoles per Ltr)  rather than ng/ml (nanogrammes per Millilitre) so you will need to convert the result you may get from your clinic's lab.

see here for an explanation of this difference in measurement and a tool for converting nMol/Lt to ng/ml 

Sandy

Sandy,

I would be cautious in raising vitamin D level much above 80 ng/ml. Research has shown (will post link when I find it again!) that ideal level for vitamin D in the blood for cancer and overall health is between 60-80 ng/ml. Levels above this range as well as below have less an effect. Levels above 100 ng/ml could lead to negative results. Taking vitamin K2 along with D3 as you described is an excellent insurance policy against overdosing.

The amount of vitamin D3 to take to achieve ideal blood levels is unique to each person - some need less, some more. In general, levels above 10,000 IU's per day are not necessary to achieve desired blood levels. But some people may need to take more in order to achieve a proper blood level. The key is vitamin D level in the blood, not ingest dose per se.

Below is an excellent video summarizing why vitamin D is so important to cancer prevention. I will try and find the other reference which shows vitamin D level above 80 gives lower results than between 60-80. Keep in mind - more is not always better. In the case of vitamin D, there is a sweet spot.

https://www.youtube.com/watch?v=RA5YOcZWDeY

p.s. An interesting fact - exposure of our skin to noon time summer sun in mid latitudes produces no more than about 10,000 IU's per day vitamin D - max. If nature has evolved to provide and use this amount - might be wise to follow same.

Hi Scuba,

yes, I take your point about the general guidance for D3 levels but.... as I said.... personally I find I have responded better to a higher level which is why I currently like to keep myself at 80-100 ng/ml. As you have said - it is an individual thing, just like Vit C (which is another example), I personally need quite a high daily dose of Vit C to keep myself flu/infection free. Maybe the fact that I work in the retail industry and I am exposed throughout the day to bacteria/virus via handling cash/card payment. 

On Vit C I would recommend the following link to Dr Suzanne Humphries' research on Ascorbate and how important it is to health.

Of course, I would be interested to read the research you mention that shows the ideal levels of D3 is between 60-80 ng/ml so when you have time please share. 

I have found over the years that I do well to listen to my body and monitor how I feel rather than stick absolutely to general recommendations - but as you say we are all individuals and should remember (like with TKI doses) one size does not necessarily fit all

I would say that this winter- unlike last - I have escaped my usual chest infection and I have put this down to my D3 supplementation. I have also been monitoring my mum who is 92 and suffers from arthritis. She has followed my D3 protocol over the last 6 months and has seen such an improvement in her general physical strength as well as her increased ability to weather the storms of life at an older age. It is certainly a comfort to me that she can manage her daily life with more positivity and strength. She was seriously deficient in D3 when tested by her GP. 

This very interesting conversation will run and run I think.

Best to you,

Sandy

Sandy,

It is so sad to see people suffer needlessly when a simple solution like raising ones vitamin D level can do so much.

I have not had a flu or serious cold in more than six years since raising my vitamin D level. Prior to this, I would get colds and/or flu every year. I have been around sick people sneezing away and .... nothing. My wife is now following my protocol more or less and she is getting fewer colds.

I have eliminated my arthritis which runs in my family after adding Curcumin to the mix.

If there is anything positive to say about developing CML it is that it opened my eyes and mind to overall health and nutrition. I would not have pursued this learning if I had not developed cancer. I had more issues lurking regarding my heart health (family history) that I completely reversed simply by reading, learning and applying what made sense. No more high blood pressure. No more metabolic syndrome (fasting glucose now 75, not 110). No more artery plaques (reduced over 75%). Calcium score reduced to zero. All by changing diet and adding key supplements no longer available in our diet due to over farming the same land.

Vitamin C is one of them - but I just assume everyone knows about vitamin C. Addinig Lysine to vitamin C helps artery walls repair themselves undoing damage cause by metabolism (i.e. sugar). All amazing information (https://ethicalnag.org/2014/02/14/w-gifford-jones-vitamin-c-lysine/).

I find myself more concerned about general heart and arterial health than I do CML. I already know I will never die from CML. Never going to happen. But heart attack? or stroke? That could get us - so that's where I focus. I have a suspicion that many people on this forum who are tackling CML will also end up in better overall health by doing these other things. How ironic that we CML people are probably healthier than the general population! All because we have been 'shocked' to action.

I learn much from everyone on this forum. You had David have done an amazing job. In the spirit of the holiday - thank you.

Sandy,

Here is the video documenting optimum levels of vitamin D I referred to in an earlier post.

https://youtu.be/z6M1ARtCi6c

The entire video is a great education on vitamin D overall. The spot where he shows optimum levels is around the 50:25 mark in the lecture.

For those wanting to learn more about vitamin D and overall health - this video is 'one stop shopping'.