CLL Support

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Immune Booster

I am on W&W since 2017. I was just wondering would it be safe to take ProArgi9 as an immune booster. It says one of its side effects is blood abnormalities. It is hard to get to see my doctor due to covid scan you please advise me. I am 66yrs. Old.

Thanks

22 Replies

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Personally I would not.

The amount of vitamins and extracts look pretty irrelevant. You can easily do better for vitamins with a healthy diet and perhaps a moderate strength food based multi vitamin for insurance.

The D-ribose is VERY questionable. I looked into this regarding cancer cells, and Dr Rhonda Patrick included a short section on one of her videos about NAD+, and it's associated supplements (of which D-ribose is one). It can potentially promote stimulation of lymphocyte proliferation, exactly what we do not want having CLL.

Your CLL cells are B-cells. B-cells are part of your immume system. Anything that potentially stimulates the immune system potentially stimulates B-cell growth and proliferation. This is a maddening thing for those of us interested in natural or supplemental therapies to potentially slow down CLL.

As far as I know, the jury is out on grape seed extract and resveratrol in regards to CLL, but once again antioxidants can stimulate cell's immune hardiness, so boosting the CLL cells hardiness would not be desired.

Unless these concepts are flipped on their head from future research, I don't take any claim of immune boosting as something good in the context of having CLL.

And finally, I would not take it if nothing else because it is loaded with additives and flavorings, which give me migraines.

Thank you very much for your reply. I certainly wont be taking it now. I suffer also from irritable bowel which is a nuisance.

Good to hear you have reconsidered. I lived with chronic neutropenia through 11 years of Watch and Wait, so have been very interested in anything that could potentially boost my immune system, checking out all the recommendations others have shared in this community. Confirming Hawkeagles's repy, when I've checked for the science behind why each supplement might boost immunity, in every case where there is any supportive evidence, the supplement was reported to boost lymphocytes - the very last thing we need with CLL!

Neil

Thanks AussieNeil for your reply. Hope all goes well for you. Maybe some day we might get an immune booster which wont be harmful and will do the business.

My hematologist prescribed 5000 IU of vitamin D. I read where B12(5000mcg) is a good “partner” with D. I added milk thistle(250mg)for enhanced liver function and COQ10(100mg) for my heart. I see that the COQ10 is an antioxidant. Any comments on this vitamin regimen? I am not on any prescriptions , not even blood pressure medicine. Sandra(71 yrs and active)

Dear Hawkeagle & AussieNeil. Great comments from you 2 & understood antioxidants are helping the good & bad cells. I'm curious on your thoughts regarding supplements such as Vitamins B, C, E; supplements like Turmeric, CoQ10, prostate formulas with Saw Palmetto, etc.

include. Alpha-lipoic acid

Not much I can add to hawkeagle's reply other than adding to only take supplements if you are low in them when you can be sure that they won't make your CLL worse and that the best way to obtain nutrients is through your dietary choices. Time after time after time, studies show negligible benefits from taking vitamins and supplements and occasionally doing so can worsen your health. The evidence for supplementing touted in marketing (or promoted on the Internet), is usually not all that convincing, generally based on in vitro testing and if there has been any in vivo testing, it's generally in rodent models, not clinical human trials.

Neil

Thanks AussieNeil

Same deal as mentioned above, C and E are classified as antioxidants. B vitamins have been shown to stimulate lymphocyte growth. My personal take on these is healthy diet plus low dose multi vitamin. Beyond that, my CLL specialist doesn't want me taking higher doses of any vitamins. My doc does want me on Vit D.

One thing you can do is get tested for blood levels of many vitamins, though some do not well show the concentration in tissues, just in the blood. I have had blood tests for B12, folate, vit D, and COQ10.

CoQ10 is controversial. I tried to find specific answers and research regarding lymphocytes and came up with nothing significant. You can search fro my discussion about it here. My CLL specialist doesn't want me taking it, but I have a cardiac and statin induced problems, and my blood levels tested quite low. As such I take Ubiquinol.

Alpha lipoic acid is also an antioxidant. I used to take it when recovering from statin induced myopathy. Not now.

Turmeric is a blood thinner, so be careful if you are taking any others, and it is CYP3A interactive, so can be a bad idea when taking numerous forms of cancer treatment as it interacts with the drugs. mskcc.org/cancer-care/integ...

That MSK website is a nice starting point for researching various supplements, and I found the video worthwhile. Scroll to the bottom of the page for an alphabetized set of links if you are looking for a substance: mskcc.org/cancer-care/diagn...

Saw Palmetto can work for some men, but it is also known to cause the same kind of syndrome as post finasteride syndrome: pfsfoundation.org/

I too suffer from prostate LUTS symptoms. I don't tolerate alfuzosin, but low dose tadalafil helps.

Thanks Hawkeagle. R U on Imbruvica for CLL?

No. Currently on ARQ531 clinical trial. There is a synopsis of my history in my profile.

Thanks. I'm fairly new to the site, so want to get in depth. Is there a simple way to see your profile?

Click on my user name on this post.

I have taken an Elderberry syrup for 20+ years. Advertised as an immune builder. My acupuncturist suggested it. My oncologist didn't have a problem with me taking it. I was dx 15 years ago. Never effected my W&W but did skip it during my chemo. Back on it during my remission.Best to see what ur hematologist says.

As I have said many, many times before, whenever I look into supplements that claim to boost immunity, I inevitably find evidence that they boost lymphocyte production - if there is any reputable evidence to be found. Per this PubMed abstract:

pubmed.ncbi.nlm.nih.gov/113... from the first international symposium on Elderberry in 2003, the commentary on this paper stated, with my emphasis:-

"This in vitro study demonstrated elderberry’s positive effects in stimulating immune response in human lymphocytes at (sic) all kinds, including innate and adaptive classes. It improves immune response pathways to T-helper cells, apparently balancing the body’s response to infectious agents."

Neil

The biggest question remaining to me is how does each of these substances potentially affect healthy lymphocytes vs CLL cells? If there is actually differentiation against CLL's favor, it would be nice to know. I doubt that we will see much of that question actually answered through clinical research.

Hi, I’m taking daily 1000 Vitamin C and 2000 IU 2 times a week vitamin D3 1 tablet Zink + curcumin daily

Hello al444

You may want to research Chris @ cllcanada. His research on vitamin C showed that it was not good for CLLers, as it increased lymphocyte production.

Hi tkx for your advise, but what the best to use ? Any ideas.

Hello al444

I would suggest you ask your CLL doctor. I tried every thing you could imagine and some no one in their right mind would try to slow my CLL. I was tested for vit D levels and was slightly low, so I take vit D3 and calcium per testing. I also take small doses of magnesium for leg cramps, but have to limit that due to diarrhea.