Does anyone with CLL is taking SUPPLEMENTS lik... - CLL Support

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Does anyone with CLL is taking SUPPLEMENTS like ZINC?

unairdefamille profile image
β€’32 Replies

Hello, I've heard that ZINC could be helpful - but my oncologist doesn't know about supplements, bless his heart, he know a lot about conventional medicine! If anyone has a good NATUROPATH cognizant with CLL and has had good results or experience with supplements, please share. THANK YOU πŸ˜ŠπŸ™πŸΌπŸ’–

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humaniquarian profile image
humaniquarian

zinc is frequently recommended for all people to boost immunity .My oncologist recommended it without reservation

unairdefamille profile image
unairdefamilleβ€’ in reply tohumaniquarian

Many thanks. What dosage did he prescribe?😊

humaniquarian profile image
humaniquarianβ€’ in reply tounairdefamille

cajunjeff is properly listing articles reporting zinc at 225 mg is "bad". it is .

5 mg all my oncologist suggested . Nothing near toxic doses.

Not even close to safe limits of 40 mg daily. 5mg is a mere 12.5% of so called acceptable supplementation.

some people may think more is better but a meager 5 mg of zinc? is totally fine in my book .

I don't know how/why people go from the sometimes recommended 40 mg zinc to such extremes

I'll stick with the 5mg sublingual

as always everyone is different..

unairdefamille profile image
unairdefamilleβ€’ in reply tohumaniquarian

I really appreciate the info. I agree that in this case LESS IS MORE. I'll look into finding sublingual Zinc at 5 mg. 😊

AussieNeil profile image
AussieNeilPartnerAdministratorβ€’ in reply tohumaniquarian

I think you meant to say that 5mg is 12.5%, (one eighth) not 2.5% of the 40mg maximum daily recommendation for zinc. It still makes sense to check if your diet could be an inadequate source of your zinc requirements and if so to more naturally source it by making slight dietary modifications rather than taking a supplement. This reference lists the amount of zinc in common food sources: healthdirect.gov.au/foods-h...

Neil

humaniquarian profile image
humaniquarianβ€’ in reply toAussieNeil

you are correct ' i'll amend my figures

onu1tadi2 profile image
onu1tadi2β€’ in reply toAussieNeil

Good to know. Thank you. As a very sparse meat eater, mainly fowl, this info is useful.

cajunjeff profile image
cajunjeff

Do you have a zinc deficiency? Most of us get all the zinc we need from our diet.

A common misconception with supplements is that more is better when more can be worse. Since supplements are largely unregulated, you might be getting massively more of a mineral or vitamin than your body needs.

I think your oncologist has a mainstream view of supplements and probably believes, as my doctors do, that unless one has a documented deficiency of a mineral or vitamin, supplements can do more harm than good.

Why would you add zinc without knowing if you have a zinc deficiency? People who like supplements tend to be naturalists. Wouldn’t it be better to get zinc from natural sources like meat and poultry?

I would get tested if you suspect you are zinc deficient before adding abnormal amounts of zinc to your diet. Make sense?

Here are some of the dangers of adding too much zinc to your diet:

healthline.com/nutrition/zi...

unairdefamille profile image
unairdefamilleβ€’ in reply tocajunjeff

True. You make a lot of sense. I didn't know poultry provided Zinc. I have chicken once a week.😊😊

Vlaminck profile image
Vlaminckβ€’ in reply tocajunjeff

Thanks for reference, cajun, although if I you don't mind my saying, as a general matter, I would never rely on these internet med cites like "healthline." Try putting "ncbi' in medical searches, to get legit medical articles.

cajunjeff profile image
cajunjeffβ€’ in reply toVlaminck

Vlaminick, I am not good at much but think I do a decent job of internet research and considering the source.

The healthline article I linked too is just a harmless, general knowledge article on zinc with facts you would find on most any health site. It’s also heavily annotated with links to the sources. It’s a simple subject we were discussing and I didn’t feel the need to look for peer reviewed clinical trials.

Was there something in the article you thought incorrect ?

Vlaminck profile image
Vlaminckβ€’ in reply tocajunjeff

Meant no offense whatsoever and thanked you for reference. I am sure you are good at research (and so much else). I don't know if anything in there is incorrect. I just mentioned that as a caution for others since there are so many commercial sites that pop up first on most searches. By the way, I like "cajunjeff" as your name, was wondering if you were from Cajun country?

cajunjeff profile image
cajunjeffβ€’ in reply toVlaminck

Vlaminck, no offense taken. I had linked to that article because it was very easy to read, and was factual as to the dangers of taking in more zinc than a body needs. I think supplements are worthwhile for people with specific vitamin or mineral deficiencies. I would guess most people on here who use supplements have no idea if they are deficient in whatever mineral or vitamin they are supplementing they and what actual amount of a mineral or vitamin is a healthy level. The thinking is more along the lines that since zinc and vitamin c are good for our immune systems (with which I agree), that lots of zinc and vitamin c is even better. That thinking is flawed to me.

And yes I do live in the heart of cajun country. Creole country is a bit east of us. Creole food is cajun food with tomatoes in my less than expert culinary opinion. I like both.

Vlaminck profile image
Vlaminckβ€’ in reply tocajunjeff

I only got to spend a few days in "Cajun" country, got to eat crawdads at Lafitte's Landing. This was ages ago. I enjoy Cajun music too. I agree about making sure no deficiencies -- which is what led to my B12 shocker (I posted how I show signs of deficiency and got tested, only to find I have way excess -- gonna see another doc next week to hopefully solve this mystery.) And you are right that Healthline probably educates a lot of folks about a lot of things they might not otherwise know in a manner easily understood. I guess I am often trying to get into the weeds.

cajunjeff profile image
cajunjeffβ€’ in reply toVlaminck

Lafitte's is John Folse's place, I think in Donaldsonville and Slidell. I met him a few weeks ago at his New Orleans restaurant, R'evolution. Cajun food is a poor man's food where inexpensive cuts of meat can turn delicious when smothered in gumbos or jambalayas. Folse does a really high end cajun, hardly for poor boys. I have tried my hand at cooking his crabmeat beignets. He's very good, I can reproduce his shrimp creole but not his beignets.

I think healthline and web md and such are okay sites for gathering basic info. I certainly would not consider them authoritative on the many complex issues involving cll and cll treatment.

Considering the source can be very important. I would be skeptical of a study saying chiquita bananas cure cll that was funded by chiquita. If the same study was done by top doctors at md anderson and then peer reviewed, I would be eating more bananas.

🍌🍌

craterlake profile image
craterlakeβ€’ in reply tocajunjeff

Jeff , i do A LOT of research into all kinds of health info and for a simple , yet usually unbiased and informative site , healthline is one of the better sites . with references as you pointed out ... thanks for all your help , hope you have a great day .... james

Belfastbees profile image
Belfastbees

I take a vitamin D supplement other than during summer when I'm outside soaking up the Irish summer sun and getting it naturally. It is reported it helps boost the immune system (cant say if it will perk mine up as its malfunctioned). Easy and cheap so why not.

Dont take any other supplements.

unairdefamille profile image
unairdefamilleβ€’ in reply toBelfastbees

Thanks.

humaniquarian profile image
humaniquarian

It's a nothing little supplement at 5 mg sublingual, but seems to be important as a possible preventative for the common cold.Immediately upon covid outbreak my MD sent out a message and zinc was one of only a few supplements recommended to boost immunity.

LeoPa profile image
LeoPa

I take 25 mg of zinc every day. Also 2000 units of vitamin d and 120 micrograms of vitamin K2.

Floxxy profile image
Floxxy

Yes, I am.

Vlaminck profile image
Vlaminck

I've been taking zinc about every 2-3 days (just checked, thanks for making me --it's a whopping 50 mg). But recently had a little spell of pvcs (type of arrythmias) as I used to have a lot of a decade ago -- at which time I would supplement with copper and a couple other things to help stop them. And they'd been gone. Then I realized I have probably gotten myself deficient in copper -- or at least possibly (since the two sort of counter-balance) and took a small copper supplement. I am now going to be more conservative about zinc supplement and seek out smaller dose zinc.

onu1tadi2 profile image
onu1tadi2β€’ in reply toVlaminck

I too experience occasional arrhythmia and am interested in how much copper you take and in what form. I am not willing to take heart meds for it as it only happens when i am stressed and short periods. Would greatly appreciate any other advice too on this topic.

Vlaminck profile image
Vlaminckβ€’ in reply toonu1tadi2

Hi, onu --sorry about your arrhythmias. First, let me say I bet most adults have some at some time or another. Second, if you have enough to be concerned, I'd definitely see a doc, hopefully to confirm that these are pvc, a type that is not that rare and usually not dangerous (premature ventricular contractions). I say that because there are a number of types and some that are dangerous and you first need to find out what you have. A-fib is a type that can be pretty darn serious. Anyway, back when I had them pretty much all the time, even to the point of having them every 2 or 3 beats, I had a supplement regimen I took to help. Don't know if that's what ultimately helped or something else in my life, but they pretty much went away. I would be glad to share that regimen with you but first let's make sure you are talking about pvcs. Will you get them checked out and let me know? I'll just say, I noted that I tended to get them after a cold and had taken a lot of cold-eze (cold lozenges containing zinc), and what I took were tablets of only 2 mg of copper at a time.

MyCLLJourney profile image
MyCLLJourney

In case readers don't know, Zinc prevents your body from absorbing copper, so it's best to not take it every day. 2 times a week would be better.

unairdefamille profile image
unairdefamille

Thanks, I appreciate that info.

wizzard166 profile image
wizzard166

Zinc won''t hurt you. Basically you are supposed to take it only when you feel a cold coming on. If you start Zinc pills within half a day of feeling cold symptoms, it supposedly will reduce the severity and length of the life of the cold. Maybe yes, maybe no, who knows. Anyway there isnt any harm as far as I've read.

Carl

Davidcara profile image
Davidcara

The only supplements I take while on ibrutinib are Vitamin D ( my level was measured and was low ), and Biotin to help combat brittle fingernails. Although, lately I keep forgetting to take the biotin and my nails remain in decent shape. I might stop the Biotin and see what happens.

unairdefamille profile image
unairdefamille

Thanks to all who answered and BEST OF HEALTH TO YOU. Now, about PROBIOTICS, anyone takes them while on ACALABRUTINIB. Your experience is invaluable to me, so a huge hug and blessings to those of you moved to answer πŸ€—β­οΈπŸŒŸπŸ˜‡

DawnRedwood profile image
DawnRedwood

I've been taking Vit C, Vit. D, and Zinc plus B complex vitamins for the past few years. I have CLL/SLL and haven't even had a cold. I do what I can to boost my immunity.

lsutigers2018 profile image
lsutigers2018β€’ in reply toDawnRedwood

I take same stuff Dawn. I also take a small testosterone shot every 8 days to bring me up to a normal level. I am learning a lot reading what all of y'all post. I need to improve my diet diet.

DawnRedwood profile image
DawnRedwoodβ€’ in reply tolsutigers2018

I need to improve my diet too, but it is not easy! We do have a pear tree which gave us thousands of pears this year (the neighbors were thrilled to get some!), so I did have fresh fruit for a few months and canned some for later.

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