NMN supplements

[farber]

hello team, Is anyone taking NMN supplements with Imbruvica ? I was recommended this stuff Thank you, Nataliya

[cajunjeff]

Hello Nataliya. I’ve not heard of any cll doctor recommending NMN. NMN is supposedly an anti aging supplement, but there is little science to prove it works.

Did your cll doctor suggest this? I kind of doubt a doctor would recommend a supplement like this if for no other reason that it is highly unlikely NMN has been tested for what interactions it might have with ibrutinib.

An interesting dynamic about many supplements is that people who are drawn to them are more likely to try just about any supplement based upon a friend’s recommendation or based upon testimonials found online typically published by supplement manufacturers.

People who are skeptical of many supplement claims, conversely, and admittedly I fall in that group, are unlikely to take them based upon advice from friends.

I’m not anti supplement by the way. Some supplements are supported by the science. My cll doctor prescribed folic acid for me as a supplement when my hemoglobin crashed and I followed his advice.

This forum is a good place to ask questions such as the question you asked. If someone answers with scientific evidence that NMN is safe with ibrutinb, is good for us and has anti aging qualities, I would be interested in that. Who isn’t interested in the fountain of life?

I would then take that evidenced to my Cll doctor and ask his opinion if it’s right for me. I would caution anyone, however, from taking any supplement touted or suggested by some member on here without first discussing with their cll doctor.

[farber in reply to cajunjeff]

Thank you so much for your response, my doctor said this is not FDA approved. I will hold on this until some other people will response. It has a lot of benefits that is why my friend is recommended to me.

[cajunjeff in reply to farber]

You are welcome. I think it’s true that the FDA has not approved NMN. To my understanding the FDA generally does not “approve” any dietary supplements before they are released as they are considered dietary and not medicine. Therein lies the risk. No one on here can tell you if NMN is safe to take with ibrutinib. Someone could say they take NMN and ibrutinib with no issues, but so what? Lots of people get very dangerous side effects from medicines others tolerate.

A consequence of this is that many supplements reach the market without going through clinical trials and testing to prove they are safe and effective as do the medicines we take. Your doctor saying it’s not FDA approved is another way of saying that he has no way of knowing if NMN is safe or effective because there is insufficient data to decide that. There is a study from Japan out there saying it’s safe, but thats not near enough to get approved as a medicine nor would it help your doctor know if NMN has dangerous reactions with ibrutinib.

Oddly enough, the FDA has actually gone so far as to say NMN should not be sold in the US, although this is of questionable enforceability. And it’s not because MNM is unsafe or not, but rather because NMN is being investigated as a medicine. The FDA does regulate medicines and requires proof of safety and efficacy before marketing. Thats different from dietary supplements that dont need FDA approval to hit the shelves.

We have any number of members reporting they use certain supplements for their cll that help them. I think it’s their body, their right to take what they want. I also think it important that people clarify whether they are taking supplements upon the advice of their doctors. Rarely is that the case. More often cll medical doctors are wary of recommending untested and unapproved supplements.

[Hidden]

First, please lock your post. You will get more response when it is not visible to the Great Google Monster. Many members here value their privacy within this community.

I looked into Dr David Sinclair's research a couple years ago before Dr Brad Stansfield essentially debunked some of it, especially related to resveratrol,

But I was interested in NAD and NMN based on Sinclair's claims. The only reference I found on the subject related to cancer and CLL was that the effects of NAD on Sirtuin can have the effect of increasing lymphocyte production. Not a good thing with CLL.

Many well meaning people think that boosting the immune system combats cancer and therefore your CLL, but an immune booster that increases B-cell production can make your CLL grow more.

[Toothdoctor in reply to Hidden]

Thanks everyone just wondering if anybody is taking an IV infusion of vitamin C

[Sepsur in reply to Toothdoctor]

see the final couple of sentences of @justeagle’s post - I was told to be wary for same reason

[kaymack in reply to Toothdoctor]

I had a friend with Mantle Cell Lymphoma and another with Ovarian Cancer. They both had Vitamin C infusions privately, in the months before they died. It was not on the advice of their doctors.

I remember reading about how UK CLL expert, Dr. Terry Hamblin said that high dose Vitamin C could boost lymphocyte production. That would not be a good thing for anyone with CLL.

[Vlaminck]

I tend to be on the other side of the issue, in that I take many nutritional supplements and don't think many doctors are trained on nutrition much at all. (I am in W&W, not taking treatment) However, I think there is a difference in what I consider to be nutritional supplements and extracts of foods (green tea extract, curcumin, luteolin, pectin, olive oil) and such things as NAD and NMN. i had ordered NAD from life extension, but when I read up on it, the whole sirtuin issue, it sounded too complex a concept for me to fully grasp what it would do in my body so I didn't use it. NMN, I believe, furthers NAD. I have had periods when I have taken the related niacinamide -- with the approval (he didn't recommend, but spoke approvingly when I told him I was taking it) of a dermatologist who knew I had CLL. This can help, esp together with vitamin C, with precancerous actinic keratosis which I had and it helped. I also take, as I've discussed on here, monolaurin, a coconut fat derivative to hopefully help v. epstein barr and covid, both of which are "enveloped" viruses. And I agree with cajunjeff not to read about supplements on the sites promoting or selling them nor on such junk sites as healthwise or webdoc or other commercial sites but ncbi or other medical journal sites, the more recent the better. And as has been said, no food extract is likely to ever come before the FDA so will never have "FDA" approval, just as coconut oil doesn't. And again, in my experience, it seems that few doctors study nutrition. In fact, I'm impressed that cajunjeff's doc recommended folic acid. But given the recency of BTK inhibitors, etc., I agree with the advice of others. You never know how things may interact --- even grapefruit juice acts adversely with some medicines.

[Big_Dee in reply to Vlaminck]

Hello Vlaminck

I agree with just about everything you stated, however CLL doctors do not need to be experts in "nutrition". My CLL doctor suggested that I attend a hospital provided nutrition class for cancer patients. Cancer patients is a very broad field and did not drill down to specifics of CLL. My CLL doctor has a complete list of all the supplements I take and why, none of which at earth shattering. My CLL doctor did however suggest I eat pineapple to increase my platelets. Specifics on what not to eat were covered in introduction to chemo treatment, like you mentioned. Blessings.

[Vlaminck in reply to Big_Dee]

Interesting. Thank you, Big_Dee. I have never run into any doctor here in Virginia who has ever mentioned the word "nutrition" that I can recall, much less recommended a nutrition class. I do not mean to condemn all docs, but instead to note that this is how medicine seems to have been taught (w/o any focus on nutrition). So it is interesting your doc both recommended nutrition class (good for him) and recommended pineapple. Actually, there are a number of supplements, such as papaya extract, that increase platelets, but temporarily, not fundamentally, as I understand it. Wonder about the pineapple. Thanks for posting.

[headjog]

It's an interesting topic - with over 90,000 supplements on the market (ZOE) but that doesn't mean to say some aren't beneficial. I bought my better half some Bromelaine for her athritis...(she can't stand pineapple!) and it reduces her pain massively, when she stops taking it... the pain comes back!