Hi Everyone, a couple of the people I buddy have asked me if I take a turmeric supplement. The answer is no.
Please read info posted online by the Roger Cancer Centre in the US.
I daresay there’s lots of info on other websites as well.
Circumin ( turmeric)
Properties anti inflammatory stimulated bile production
Can cause nausea, diarrhoea but generally well tolerated.
It should be avoided during chemotherapy and radiotherapy. Circumin has some estrogenic properties and should be avoided by breast cancer patients, it also has shown to decrease platelet function and so should be avoided by those on blood thinning therapies. Hydroxicarbamide is of course a mild chemo, and so I steer well clear of turmeric supplements.
Ps I meant the Rogel Cancer Center in the US no the Roger cancer centre.
All the best Louise
xx
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Loubprv
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Thanks for posting this Louise. So many folks on here have started taking it without full knowledge of the risks. Hopefully many will read your post. Katie
I tried it for couple of weeks and started feeling enlarged lever and spleen, I was checked by my specialist and she said nothing is enlarged. I stopped it and started it over again after sometime, but again the same feeling right from the third day. So I decided to quit this.
Hi Wyebird. Funny you should mention that as I consume quite a lot of turmeric as it is in every asian dish. My best friend is white and married an asian man and more often than not I eat there regularly and love making the same recipes at home but admittedly go overboard with the turmeric because I had heard about the supposedly good benefits of it. I also suffer from quite a lot of big bruises especially to the legs (it looks like an horse as kicked me sometimes!)but I would like to see more evidence about it before I changed my eating habits,in fact i'm off to my friends son's wedding the weekend and its a full trational asian wedding with vast amounts of asian food, I do not think this report from the professor in the us will even cross my mind! Lol. Atb, tina.🤗
Yes, Lou, you are definitely right but I only replied as I didn't want people to think a small amount in food would harm them in any way and avoid turmeric altogether. Atb,tina,x🤗
Like any biologically active substance, Turmeric-Curcumin can have both benefits and risks. Some are harder to gauge since there is so much variability in the supplements that are on the market. Many doctors are unfamiliar with this sort of complimentary health approach and prefer the meds with which they are more familiar, even when they are more dangerous to use.
I have had great success with Turmeric-Curcumin for relief from inflammatory symptoms, specifically osteoarthritis. I had previously tried prescription strength Ibuprofen, Meloxicam and even Lyrica. The NSAIDs helped a little bit - but are very risky to use long term. The Lyrica mad it so hard to concentrate that I could not safely take it. For me, the Turmeric-Curcumin was more effective that anything else I ever tried and there have been no adverse effects. That being said, we are all different and others might not react the same way.
It should be noted that Turmeric-Curcumin does have mild blood-thinning effects. Most anti-inflammatory agents do. It is something to pay attention to if you are taking aspirin or some other blood thinner.
If you are going to use any supplement, it is very important to find a reliable manufacturer to ensure quality. It is also important to be sure your providers know what you are using as there can be interactions with other medications. I chose to seek consultation with an Integrative Medicine specialist with extensive knowledge regarding complimentary health approaches for just this reason. Most of my docs simply lack the expertise to provide meaningful input regarding what is or is not helpful/worth the risks.
Some caution with supplements is a good idea. The supplement market is poorly regulated and you always want to be sure you know what you are actually taking. Also - if something is biologically active enough to help you, it can also hurt you. Supplements can and do interact with medications. Fish Oil is a good example - it potentiates the blood thinning aspect of aspirin and is contraindicated if you are on an aspirin regimen.
Having said that, when you find a reliable source, some supplements can be very helpful in managing various conditions. Sometimes there are answers outside of traditional Western medicine that really do work better. I try to keep an open, but skeptical mind regarding complimentary health approaches. Actually do the same with all health interventions.
We have to be our own project managers - something I learnt 8 years ago when my gp gave me an overly long course of an antibiotic called Nitrofurantoin for 9 months.
One tends to trust a gp who has been treating one for 30 years. Big mistake.
This led to nitrofurantoin induced peripheral neuropathy and histamine intolerance. Something of a nightmare. I now approach anything regarding medication or supplements with great caution and would urge everyone else to do the same.
On the other hand I take 1000 mgs of hydroxicarbamide daily ( no major side effects after 10 years touch wood) along with levothyroxine, aspirin and loratidine. The three former drugs are keeping me going and the latter makes life distinctly more bearable.
However, sorry, I’ m afraid I found both functional medicine and integrative medicine practitioners not only lacking in knowledge re PV and HI but both very expensive and decidedly ineffective.
Sorry to hear about your experience with the antibiotic. The effects of those meds can be far more harmful than is commonly known. I had a similar experience with a couple of urologic docs and a prostate surgery that did more harm than good. Common theme - they knew nothing about MPNs and did not even bother to consult prior to the surgery. Bad things can happen when you trust docs that do not deserve to be trusted. Fortunately, most of my docs have been better than that.
I expect Integrative/Functional medicine docs are like all others. Some are better - some are not. I think they tend to operate outside the bounds of common Western medicine, so quality of care may indeed be somewhat inconsistent. I am glad I found a good doc. It was actually my PCP who recommended her.
It was actually my rheumatologist who suggested the Turmeric blend. It worked better than anything else she prescribed. Since starting it, I have not used nor needed any NSAIDs. It works for me but will not be a good choice for all. That is the case for all meds and all supplements. If something is biologically active enough to help you, it also has the potential to hurt you. That principle applies across the board. You have to take responsibility for what you put in your body and be sure you understand the risks. Unfortunately, some prescribers do not do such a good job informing their patients or monitoring for adverse effects.
I am glad to hear to hear you have been able to tolerate the hydroxyurea. I am HU-intolerant and got toxic effects even at sub-therapeutic doses. Fortunately, it turns out I do not really need to take it and a phlebotomy-only regimen is the better choice for my case of PV. Oddly enough, aspirin is also not such a good thing for me. I always had excessive bleeding and bruising when on it. It was getting progressively worse. Back in April 2019, I was diagnosed with a hemorrhagic brain tumor. It was a good thing I stopped the aspirin. Just goes to show we are all different and an individualized approach to treatment is really important. One size dose not fit all.
Gosh, how right you are. Sadly most medics here tend to put us all under one great big hat, and most tend not to listen to patients either. I have a super haematologist who always says, how are you, really, and if my haematocrit is elevated slightly asks “ what would you like to do” and I opt for venesection. Brilliant.
West Virginia - how absolutely lovely! A part of the US that looks so beautiful, bet you have lots of snow. My husband used to be a finance director for Holiday Inn about 90 years ago and we visited the states many times adding holidays to meetings.......
It’s 3 degrees here and wet. However, we live in a pretty part of the UK known as the Lake District, maybe you know it? Windermere to be precise. Count my blessings every day.
All I need now is another dog to walk on the fells. We lost our last one 3 years ago, and we now have our name down for a cockapoo.
Hope you’re ok Hunter, the brain tumour business sounds horrible. Have you ever heard of David Servan Schreiber? Now that was an inspiring story - he swore that diet, exercise and nutrition kept him going 20 years longer than his prognosis. He made quite a few interesting videos. Charming chap. He was a French physician and neuroscientist. Worth having a look at his story.
Not much snow yet, but I live in the Eastern Panhandle - just inside the first ridge of the Blue Ridge Mountains. It is quite lovely here and we have a cabin on 8.5 acres on the Shenandoah River. Can't say as I am familiar with your neck of the woods, but would love to visit the area some day.
Glad to hear you found a good hematologist. My old hematologist fired himself after he realized he missed the progression of my ET to PV and was not treating me properly. He said "Your health is more important than my ego." (I actually like that doc). My new hematologist is a terrific doc. Despite 20+ years hematology experience, I am only his 6th MPN and 2nd PV patient. What I love about this doc is that he actually takes time to sit and talk to me, listens to me, and respects my right to make my own decisions. I also have a consulting hematologist who is a MPN expert. He is the Director of the MPN clinic at Johns Hopkins Hospital. That doc consults with me and my treating doc, providing input about treatment options. It is a really great set up and has improved my PV care.
The brain tumor was a bit of a medical adventure. I also have another genetic condition Neurofibromatosis Type 1. Due to this and my hx of MPN, I had a screening MRI April 2019. To everyone's surprise I had a hemorrhagic brain tumor (1.5"x1.25"x1.0") in my occipital lobe. On testing, it appeared to be starting to cause a loss of visual field. I opted to have it removed (June 2019) rather than wait and watch. It was a craniotomy-resection of tumor, which was rather scary. The good news is that the surgery was successful. I have recovered quite well. The tumor was a Grade 1 pilocytic astrocytoma (NF1 related) and turned out to be negative for all 27 of the cancer genes tested for. I consider myself blessed to have found it in time and to have had such a terrific treatment team at johns Hopkins Hospital.
The statistic are NF1 = 1/3,000, MPN = 1/3000,000, adult pilocytic astrocytoma = 1/60,000. All three together = astronomical. now if I could only turn that into lottery winnings - I would be rich!
I will look at the story of David Servan Schreiber. Sound interesting.
Trying to do that. Alas - a few weeks ago my dentist found a bone tumor on my mandible. Starting to push my teeth out of place. Probably something benign. Likely an intra-osseous neurofibroma, but we don't know yet. Going in for a CT tomorrow. We will see what the next step is.
Oh well. Life is an adventure! Sometimes a bit like that ancient Chinese curse "May you have an interesting life." This is one of those times I could wish for something a bit more boring. At least I have learned a lot in the last couple of years.
Hope all is well there. We just had a cold snap roll in so I am happy to have my wood stove fired up.
Thank you so much for this valuable info. I have had a GP suggesting Turmeric (Circumin) also and also on Hydrea so think I will refrain and mention to my haematologist. Best, Elzbietta
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