"Natural treatments" and ET

Turmeric! It's what makes your curry powder yellow

and your chick peas nice and spicy. Can it help with ET? 

Several people on this blog and the Facebook page have an interest in "natural" treatments for essential thrombocytosis. Turmeric and resveratrol have come up in conversation, but the hard scientific evidence about how well these substances work is sketchy.

But since there's a lot of interest in these treatments, here's what I found out, but first, a few caveats and disclaimers. (You can see from the number of "buts" that I'm a little hinky about this topic.)

First, I'm not sure what "natural treatments" means to the average person, but it seems to boil down to the use of nutritional supplements or foods that are can be purchased without a prescription and are not processed by big pharmaceutical companies, who then charge you a boatload of money for them.

Second, taken in large amounts, these substances can have interactions with your other meds, so PLEASE, people, talk to your hematologists about this stuff before you start experimenting.

Finally, I urge people to be very leery of claims for cures made by those selling these supplements and treatments. Those of us with rare diseases are sitting ducks for those peddling false hopes in order to make a buck.

So all that said, let's start with:

Lifestyle changes. The Mayo Clinic offers several lifestyle and dietary changes that can help you stay healthier and avoid developing ailments that would increase clot risk. (Remember that ET already heightens your clot risk, so you want to do what you can to reduce it.) Most of this is just common sense:

Eat healthy foods. Choose a varied diet rich in whole grains, vegetables and fruits and low in saturated fats. Try to avoid trans fats. Learn about portion control to maintain a normal weight.

Increase your physical activity. Aim for at least 30 minutes of moderate physical activity a day. Take a brisk daily walk, ride your bike or swim laps.

Achieve or maintain normal weight. Being overweight or obese increases the pressure in the veins in your pelvis and legs and is a risk factor for conditions such as high blood pressure.

Stop smoking. If you smoke, take steps to try to stop.

Indirubin, olive leaf, and turmeric. Several people over at Cancer Compass (link right) have taken turmeric for ET. The Pennsylvania State University and the University of New Mexico MPN pages have pretty much identical info about turmeric and two other herbal treatments. The info stresses that no tests have been conducted on these substances, and they should NOT be taken by some patients:

• Indirubin (Indigofera tinctoria). In case reports, indirubin showed positive results in treating CML long-term. However, no scientific studies have been done on using indirubin for CML. Indirubin is from the indigo plant and is included in a traditional Chinese herb formula that has been used historically to treat CML. Not much is known about the safety of indirubin. Ask your doctor before taking it and only use under the guidance of a knowledgeable prescriber.

• Olive leaf (Olea europaea). For anticancer and immune effects. People with diabetes and high blood pressure should ask their doctor before taking olive leaf.

• Turmeric (Curcuma longa). For pain and inflammation. DO NOT use turmeric if you have gallbladder problems. Turmeric may increase the risk of bleeding, especially if you take blood thinners, such as warfarin (Coumadin), clopidogrel (Plavix), or aspirin.

Resveratrol. A 2011 study published in the journal Neoplasia of a JAK2 inhibitor called G-6  (which contains stilbenes, the same active ingredient as resveratrol) was used in mice and showed some promise for ET. However, researchers noted that resveratrol found naturally in food would be at such low dosages as to have no effect, and no dosage for resveratrol supplements was offered. Why more research has not been done on this is a good question to ask your hematologist.

American ginseng. Finally, the Alliance for Clinical Trials in Oncology, in conjunction with the National Cancer Institute tested about 300 individuals with all types of cancer, including MPNs, with American Ginseng in 2014. The study asked patients given American ginseng and those given a placebo to measure their mental, physical, and emotional states during the eight-week test. They were also asked to rate their level of general vigor. The group taking American ginseng reported moderate rises in mental state and overall vigor. To a lesser extent they reported improved physical state. Emotional changes reported were the same in both the American ginseng and control groups.

Be careful! Be well!

Related: What patients say about Hydrea (hydroxyurea)

Related: Dr. Mesa tells you how to fight fatigue

Related: Downward facing dog for ET!

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