CLL Support Association
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Coconut Water

Has anyone else used coconut water while being treated for CLL? Coconut water has a pleasant taste and easier to consume than regular water. I am being treated with Venetoclax. Have you heard of any benefits by drinking coconut water? John

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umpireman, there is a caution to consider. Potassium levels can be elevated by too much coconut water.

universityhealthnews.com/da...

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Yes, I think I will not use Coconut water. I eat a banana each day for my potassium and my levels are in the middle of the range for potassium now. Why take a chance to disrupt the good news. John

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Iv never used coconut water but I had so many tablets to take when being treated with fcr that water made me want to throw up. Milk was great. Easy to swallow and soothing to my tummy. Just semi skimmed cows milk. I hope you are getting on well, Anne

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Hi Anne: Milk and regular water it is. I use Almond Milk sometimes. John

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Hi CLL partners I am on Imbruvica 4-th year and I have leg cramps from time to time and during exercises but when I take Potassium as banana or “K=Potassium tablets 99 mg I don’t have any. Stay healthy and happy in spite our diagnosis avoid crowds and infected people big and small,Fall is coming. SZR

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Hi, Iv been expecting to have treatment for months but my numbers are just borderline. I will be able to have Imbruvica and when the time comes will be looking for advice on best time to take etc. Have you had side effects? 4yrs sounds good. Doc gave me quinine tablets for cramp. Some say its not good with cll but I still take and it helps. Anne

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I always took Imbruvica an hour after my morning meds. I experienced some swelling of my left arm, leg and foot over time. Had treatment for these issues, but the swelling never completely left. And some twitching that would come and go. Also, like I mentioned, I had heart issues both before and after taking Imbruvica which eventually lead to shocks to the heart from my defibrillator. At that point, I had to stop the medication. But, we all are different. You may not experience these side effects. John

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I will now be eligable for imbruvica thanks to everyone fighting Nhs England. My numbers vary so much. They will rise and then plateau but consultant looking at platelets and hemoglobin levels. If they drop too much they will treat. I dont want Fcr again and although others have written about when to take imbruvica and side effects, I am going to take note for the future. I hope your problems improve, Anne

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I drink coconut water everyday. My potassium levels are always low and I don't believe drinking coconut water has helped me a bit. Also, watch out for sugar in coconut water. My cardiologist is the person who suggested drinking coconut water.

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Thanks Shazie. All things being considered, I will stick to plain ole water. John

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Shazie, the caution in the linked article is to not drink too much.

Your added point of watching out for sugar is a good point (again, would be a caution to not drink too much).

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Yes, I could not drink too much. But, I found out that you have to buy 9 bottles in a box at Costco and it could get expensive as well.

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All coconuts contain sugar. How much they contain depends on the type of coconut and its age. Something to note though, even the coconuts with the higher levels of sugar still only contain around 2.95ml of sugar per 100ml, which is not a lot. A tin of coconut water — which is how most of us get our coconut water — is generally about 300ml. So. In one can there can be up to 9g of sugar, which is a little over 2 teaspoons

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Thanks. Good to know. John

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Curiosity question - does it taste like coconut? I have never liked coconut! When I was growing up, when my parents received a good box of chocolates, to celebrate whatever, we were allowed to choose one piece a night. A fate worse than death was getting one of the two pieces in the box with coconut!

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hahaha! I have five sisters, and I know what you mean.....my worse one was the chocolate with the pink filling that tasted like a chemical cherry.....one of my sisters would pinch her piece first...(sneaky) to try and ascertain what chocolate she would get....

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I, too, have never liked coconut. Everyone raved about Mound Bars full of coconut. I could not stand the consistency of coconut or the taste. But, coconut water has a more subdued taste which I find appealing. But, based on comments in other posts about the high concentration of potassium in coconut oil, I will be sticking with plain water. John

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First thing on Halloween, when we got home with our stash, was to try to trade the Mound Bars for something edible!

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I agree!!!

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I had kind of thought I was the only one! I also really don't like coconut, and I would do anything to avoid those Mound Bars on Halloween. 🎃

I don't like coconut but @Scottxxoo, please rest assured that I DO love KooKooNut! 😊 🐈

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I love Mound Bars and I grew up with having a coconut to break and eat the meat directly from it--it is not sugar sweet.

I have never tasted coconut water, nor did I ever drink the liquid that was in the fresh coconut.

I never wanted the chocolate covered jellies, Ick, and if your family was like mine, all the chocolates ended up being squeezed to see what was in them.

I no longer eat candy. I have cut way back on sugar and salt (except for the dill pickle juice on occasion when I have nothing else for a cramp in the middle of the night.

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True confession. When no one was looking I would take a little nick of chocolate out of the bottom corner of the chocolates that were likely to be coconut - Sees chocolates and the coconut ones were rectangular, but so were some of the others. Once touched that was our pick for the night. I suspect that it is one of those things that the adults knew about, but didn't stop, because they got a good laugh out of it.

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You bad! But, I will support your actions. John

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Yes, I eat very little candy these days for the reason you stated. I find cutting back on the ice cream is my biggest challenge. I am on a low-salt diet, no more than 1,500 mg. a day. So I have had to give up some of my favorite foods at Red Lobster and Arby's. John

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I too am having a tuff time letting go of ice cream. Think I'm eating it to calm my mind somewhat (and other things) about CLL diagnosis, July 2018 after getting Aspergillus dx, May/2018. Have been eating yogurt at yogurt shops, lately.

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I have not been schooled yet in all the diagnoses that are connected with CLL. But, if your is bad, get your boxing gloves on and fight, fight, fight. That is all we can do. With all the new treatments out there, there should be one for you soon. Keep a little ice cream or yogurt on your menu as a special treat, especially when you get some good news. It will make you feel better. John

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Awe...icecream for sure. Because of aspergillus at the moment Dr's are not sure what stage. I'm going to actually buy a pair of boxing gloves to see from time to time. They will remibd me to keep fighting. Thanks so much.

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After awhile, you can't even stand to eat too salty foods, if you are like me. And, I now can't eat anything that is overly sweet, and don't want it.

The problem with ice cream for me is that, while it is overly sweet, I can cut the sweet (not the calories or the damage sugar can cause) by making a glass of milkshake with a couple spoons of unsweetened instant coffee in a little hot water.

I have to NOT buy ice cream, or I do eat it that way a little at a time. I usually buy it once a year, in the summer. I can't find any ice milk or artificially sweetened ice cream anymore.

I do have a problem with the new lightly salted potato chips. I went years with not eating any potato chips because of them being too salty. I made a mistake in trying the lightly salted. Now I have to limit that for the carbs (sugar).

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It is a daily struggle for all of us to avoid those things which are not good for us. Developing self control in this area is difficult. I have always eaten too many sweets all my life and now my training to avoid such pleasures is a work in progress. Watch out for those demon chips. John

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Love the lightly salted ones.....and the baked chips are heaven!

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Kathy: Sounds like you are hooked!! John

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I am!! Sugar is not my demon, but salty, lovely chips and dips are!!

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I haven't used coconut water but I am on venetoclax and it works really well.

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Glad to hear of your favorable results from Venetoclax. I have only been on it for 7 days but no side effects as of now. Go back to oncologist to exam my blood counts on Friday. John

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Have you tried cordial?

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What is cordial? I Googled it and it refers to an alcoholic drink. ???

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Cordial is fruit flavouring added to water. I’m in Australia where it’s very popular and originally it’s from England. You must be using an American dictionary?

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One does not use coconut water but can enjoy it.

If you don’t over indulge coconut water is just fine. Everything in moderation.

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I’m taking it too and love it. I hope there are benefits!😊

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it is useful for people with diabetes because it has a mild impact on blood glucose levels.

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It’s great to drink & also the electrolytes/Rich So help if you have excessive sweating

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Everyone who doesn't like chocolate covered desiccated sweetened coconut, understandable.

If you have ever tasted fresh coconut water, it is a totally different animal. Apples and oranges (or coconuts?). To get the fresh stuff, you have to be somewhere where they grow and are harvested. Most of us don't live next to a coconut plantation (wild guess). But whenever I am in a place that has it (especially South Asia), oh my goodness! It is the best! Nothing like a "mars bar"! The coconut flavor is very subtle, the water is just that, mostly water. But there are electrolytes and minerals. If you can get one from a coconut which has been refrigerated, that is so refreshing! But it doesn't store well, so you have to just buy it from the guy with the machete. He holds the coconut, complete with husk, in his hand, and deftly whacks of the top with mm accuracy, just exposing a small hole large enough for a drinking straw. Drink it in front of him, because the next treat is handing it back to him and he then whacks it in half, also just holding it in his hand! If the coconut is young, the meat will be so tender and soft you can just spoon it out like pudding (let's say "custard" for the UK readers). The machete guy might whack of a shaving of husk and give it to you to use as a spoon (no comments on hygiene here). I can't say what therapeutic benefit there is, but it's natural! Oh, watch out for the harvesters. There are 2 main methods, a sharp hook shaped blade on a really long bamboo pole, or the best is the trained monkey! They scurry up the tree and toss down coconuts! I mean watch out, not because it is interesting, even though it is. But a coconut palm can be quite tall, and a falling coconut could definitely do some damage!

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What a lovely, delicious story.........I felt the warm breezes as you described this!

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Hi Guy: Thanks for the education on coconuts. Fascinating !!!! All things considered, I doubt I will ever have the chance to experience fresh coconut water and meat, but glad to know it is out there. John

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