Vitamin C injections and supplements

[Powey]

I have CLL for seven years. My doctor does not think I will ever need treatments. I go to a local hematologist and to Moffitt once a year. But, I of course wonder. I am taking vitamin C injections and I take a number of supplements, but not sure if they are doing any good. Most are food supplements, such as curcumin, D3, green tea, garlic and others. I wonder if anyone else does something similar. Vitamin C injections are given by a naturalist DO doctor.

[AussieNeil Partner Administrator]

There's no evidence that Vitamin C infusions do anything for CLL and could in fact be harmful, because vitamin C can stimulate your lymphocytes. One member reported no change in his CLL after a year of monthly infusions - other than being I think about US$10,000 out of pocket. I don't know how much vitamin C you get from your injections, but I'd advise you to get your nutritional needs much more naturally, by simply changing your diet to eat more fresh fruit and vegetables!

Is it only me who considers it strange that naturalist DO doctors and naturopaths recommend injecting vitamins, but consider vaccinations not natural?

With regard to "food supplements, such as curcumin, D3, green tea", see my replies to this post:

healthunlocked.com/cllsuppo...

Neil

[Cb1391]

Hi there!

My husband has had CLL for the past eight years. He was diagnosed at age 50 and we have only done alternative therapies as well.

We are doing mistletoe injections, high-dose IV vitamin C, detox protocols (Simon Yu) and various supplemental support.

I recently read a lot about the ECGC and curcumin and have started him on that as well.

We have had a lot of amazing results with assisted lymph therapy. My husband’s inguinal lymph nodes were huge (banana and lemon sized) and are now down to the size of small marbles. He also uses the vibration plate every day.

Even though my husband feels great his anemia continues to ramp up and his red blood cells and platelets continue to decline.

They are recommending that he get on a drug, calabrutinib, but I’m very concerned with side effects.

We are prayerfully seeking God’s wisdom and path of healing and appreciate any info we can glean on this site.

[AussieNeil Partner Administrator in reply to Cb1391]

Hi again Cb1391,

Further to my replies to your other posts;

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

I'd like to specifically comment on alternative therapies here.

In short, there are hundreds of different cancers, including about two hundred blood cancers. Cancer cells are only slightly different to healthy body cells, so successful cancer treatments work by concentrating on those differences, so that healthy body cells are left alone as much as possible, CLL treatment has been transformed in the last 10 years or so with the advent of targeted therapies, specifically BTKi (the 'brutinibs' such as acalabrutinib for maintenance (long term) therapy to keep CLL under control) and BCL-2 (venetoclax), mostly used in combination with other targeted therapies for a fixed duration, usually about a year.

Alternative therapies are basically unproven therapies (or they'd be recommended by specialists). CLL cells can build up in different parts of the body and where they build up affects overall health accordingly. CLL in the blood has negligible effect. When it concentrates in nodes and the spleen, it can cause problems from the impact of the enlargement on nerves and blood vessels. CLL becomes most threatening to our health when it infiltrates the bone marrow, which is where our body needs to make hundreds of billions of blood cells - including about 200 billion red blood cells and 400 billion platelets per day. I've evaluated alternative therapies for CLL for coming on 14 years and with respect to mistletoe injections, high-dose IV vitamin C, detox protocols, you are wasting your money. Our bodies naturally detox, thanks to the tireless efforts of the liver, which is the only organ that can rejuvenate, provided you look after your health by keeping fit and eating healthily. A common cause of liver toxicity is taking supplements. When I tried to get up to the recommended EGCG dose to slow my CLL progression, my specialist became concerned at the worrying increase in a couple of my liver function tests, which gradually dropped back to healthier levels when I cut back on the EGCG and stopped taking an immune boosting supplement (which I subsequently found out was ill advised - taking immune boosters when you have CLL can accelerate your CLL). See the attached plot of my ALT liver function test. It took months to drop back to my prior healthy level before I tried supplements.

That your husband's anaemia is worsening and his platelet count is falling, shows that his bone marrow is struggling. He needs to start on a proven CLL treatment; delaying treatment will increase the likelihood of needing red blood cell and/or platelet transfusions which aren't without risk.

Per my reply to your other post, acalabrutinib is a good treatment choice. Your husband shouldn't take any supplements without first checking with the doctor that recommended acalabrutinib. You don't want the extra load on his liver, etc and supplements could interfere with his treatment by interacting with acalabrutinib increasing the risk of unpleasant side effects.

Neil

EGCG can poison your liver as this peak in ALT, a liver function test shows

[Cb1391 in reply to AussieNeil]

Thank you, Neil! This is helpful info that I will share with my husband.

We are scheduled to meet with a CLL specialized doc on Monday.

This will greatly help with my questions!

Are you currently or were you taking the acalabrutinib? Did you have negative results? Concerns I’ve seen here and elsewhere are pain, fluid on joints, heart issues and secondary cancers. The doc we saw Thursday mentioned none of those things.

Thanks again!

[AussieNeil Partner Administrator in reply to Cb1391]

That's fantastic that you are meeting with a CLL specialized doctor on Monday. Navigating the functional, holistic, complementary, naturopathic, alternative, or whatever you want to call the means by which we try unproven treatments, is very challenging, unless you have an appreciation of how we determine what can be effective treatments, as you can glean from reading this pinned post healthunlocked.com/cllsuppo...

In fact, CLL researchers have a pretty good idea about how CLL cells function and their potential weak points by which they can be selectively eliminated. This article of a decade ago by two top, internationally recognised CLL research specialists summarised the situation back then with regard to potential ways we might slow CLL with natural approaches: hematologyandoncology.net/f...

What we knew back then and which really worked out, is that B lymphocytes (an integral part of our adaptive immune system) rely on some key mechanisms by which our bodies decide whether they should hang around or quietly die, with their cell constituents recycled or discarded through the actions of our liver and kidneys. B and T Lymphocytes sense threats to our health via receptors, B and T cell receptors respectively. If they sense markers for infection through their receptors, they clone to make more lymphocytes to deal with the infection, otherwise they eventually die in a carefully programmed way - apoptosis. CLL happens when B cell DNA incurs damage that blocks the primary way in which B cells should die. They still die eventually, but they get enough signalling through their B cell receptors to clone faster than they die, so they gradually build up in our blood, nodes and bone marrow and sometimes elsewhere. When our bodies begin to fail from the impacts of that build-up, we need treatment.

That targeted therapy research, which started some 20 years ago or so, produced two competing ways of selectively switching off the B cell receptor stay alive signalling in CLL cells (and unavoidably healthy B cells to a lesser extent) BTK inhibition and PI3k-delta inhibition. From the former, we've seen the development of many competing, mostly very effective 'brutinibs', but with different side effect profiles and adverse event risks, per this post: healthunlocked.com/cllsuppo... We also saw the parallel development of PI3k-delta inhibitors; duvelalisib idelalisib, duvelisib, umbralisib, zandelisib - see healthunlocked.com/cllsuppo...

The latter treatments fell by the wayside, because phase 4 results showed what the FDA considered to be an unacceptable adverse event profile - too high a risk of death.

The above, by the way, shows the difference between approved and alternative treatments; approved treatments have to show efficacy all the way through observed anti-cancer effects on cells observed with a microscope - in vitro testing, initially in animal studies, usually mice models, then human cell in vitro testing, then if that's promising, in vivo testing in animals (increasing doses to see if the treatment works with an acceptable risk to the animal), then a phase 1 in vivo clinical trial (tablets or infusions in increasing doses to see if the treatment works without hurting people), then phase 2 of a selected dose in a larger group to see if it is worthwhile investing in a large and expensive phase 3 trial to get approval. Both ibrutinib and idelalisib managed to get FDA approval, only for phase 4 studies (longer term observations) to result in approvals being withdrawn for idelalisib and clinical trials of the other 'isibs' to be more carefully assessed. See: healthunlocked.com/cllsuppo...

Ibrutinib was so successful, there was a scramble to join the market, which resulted in a head to head study of acalabrutinib and ibrutinib (rare in cancer research), which showed acalabrutinib to be the superior treatment.

For a supplement to be sold with a claim to provide a health benefit, only requires some research showing some promising in vitro results - usually animal studies. Then, because the US supplement industry lobbied against the loss of their business back in the 90s, supplements can be sold as if they are food additives, despite them being sold with claims to improve your health. They only get withdrawn from sale when proven dangerous, but can still generally be purchased on-line from somewhere in the word. When there's a demand, someone, somewhere will meet that demand, irrespective of safety considerations.

Neil

[Phil4-13 in reply to AussieNeil]

AussieNeil, this sight encourages self-advocating along with our doctors' guidance. Due to my gastric problems, IBS, and diverticulitis, eating certain healthy foods results in bloating, pain, and diarrhea. Vitamin tablets also gave me digestive problems. My doctors do not push supplements. Last May, blood tests slowly worsening as expected with CLL(WBC 105), and I just hadn't felt well. This was 6 months ago. But was not recommended for treatment. Other blood numbers not considered low enough for concern. Well, going back 3 years ago, slowly recovering from Covid, I did receive a vitamin B IV from a holistic doctor. I refused vitamin C, and quickly felt better. So, back to the present, as I was saying, so 4 months ago, I started the same B IV's every two weeks. My WBC has gone down to 85, other bloods near the same. My next blood work is Feb. 2024. We will see. My doctors will not endorse this, as expected, but did ask me, "How are you feeling?". I feel so much better. I'm back to working full time hours and back to my gardening and cleaning house better. I know this isn't for everyone, it is NOT a cure, and I only comment here, because I believe all options to a better quality of life should be looked at, just as different "approved" treatments are looked at, some having more side effects than others for individuals. In all our decisions in selecting a choice, "we will see".

Sandra

[RosettaClapp in reply to Cb1391]

Sadly,all CLL patients are more susceptible to other cancers especially skin cancer

[CoachVera55 in reply to Cb1391]

Hello there Cb1391, it is scary & the numbers don’t lie. That sounds like my plight, I fought the abdominal water balloons by going Plantbased Whole Food, Raw & Juicing so I could digest my food around those enlarged nodes but my bloodwork continued to decline. I was encouraged here to start treatment while I was still strong enough to deal with any possible side effects & that you can not be sure how soon you could start treatment once you needed to because of any possible unknown obstacles. Basically don’t wait too long & make it a bumper ride then it needs to be. Look at the available choices, look at all of the parameters, make a decision, start the medication of choice, self monitor as closely as possible, stay prayerful & live your life. Yeah it all sucks but it could be worst. #GODSPEED🙏🏾

[MisfitK]

I 2nd AussieNeal - it sounds time for your spouse to start acalabrutinib.

What doesn't get mentioned a lot here is that CLL can decline, but it can also just "move" - while ALC counts can stay the same or even do better, RBC and platelets can plummet, nodes and spleens can inflate, and other blood issues can crop up. It's why just looking at ALC and saying "he's improving" or just looking at a node or two reducing isn't the full picture on the disease.

That's not to say what you've done hasn't helped. I'm a big believer that a lot of that does. I actually follow some of it myself, and I definitely think it's helped me as I've stayed in watch and wait for longer than I should have (I have really bad markers and came in at stage 2).

But it doesn't cure, at best, it just slows, and your spouse is now at the time that a more targeted and potent answer might be needed. And that's okay, b/c it is there to be had.

[PaulaS Volunteer in reply to MisfitK]

Very good point MisfitK, when you say, "looking at ALC and saying "he's improving" or just looking at a node or two reducing" isn't the full picture on the disease.

We tend to think we're improving when our ALC goes down - and often we are. But as you say, lymphocytes can just "move" from being in the blood into lymph nodes and spleen, where they are more protected and resistant.

The opposite can happen when we start on treatments. When I started on Ibrutinib my ALC shot up dramatically, but luckily I knew from this forum that the lymphocytes were being drawn out of my spleen and nodes and into the blood - which was a good thing. They would eventually go from the blood (though for me it took a long time).

Paula

P.S. I hesitated in calling you "MisfitK", but I assume you had your reasons for choosing that name.

[MisfitK in reply to PaulaS]

I love my user name (who isn't a misfit at some point in life), but if you don't, you can also just use the "K" which does refer to my 1st name:)...

[CoachVera55]

Hello Powey, I am curious what is your doctor basing this wonderful prognosis on exactly???

[Jmiah717 in reply to CoachVera55]

Yeah, I cringe when I hear a doctor said something like that. Even if they believe it, why would you say that?? Took me 15 years to need treatment. I suppose much of it depends on how old someone is as well.

[andysnat]

Can I just commend the comments in this thread by Aussie Neil and Jamminme about the (non)effects of AltMed in CLL, or just generally.

It is very commendable that this forum points out the unproven nature of AltMed. The evidence is in, and has been for a long time!!!

I do hope this comment does not offend the sensibilities of Admins here.

[kaymack]

I remember the late CLL expert Dr. Terry Hamblin stating that high doses of Vitamin C could stimulate CLL to progress faster.

After I was diagnosed 14 years ago, I tried ECGC also (it was all the rage at the time). Overtime, I became progressively nauseous and it affected my liver function. It didn't affect my slowly rising Lymphocyte count. I went off it and now just eat a balanced diet.

[andysnat in reply to kaymack]

I once got into a discussion on the Yahoo CLL Listserv about (if I recall correctly) the right way to make a mustard poultice to reduce lymph node swelling. Terry commented that as well as applying the poultice correctly, the patient had to be lying down in alignment with the local Ley Lines. I was shocked that he commented in an AltMed topic, as he normally only dealt with scientific, evidence based discussions.

.

As regards boosting the immune system I think CLLers should remember that our immune system is banjaxed, and boosting the immune system will only make it better at being banjaxed. To translate, boosting it will only make it better at being broken, doing more of the wrong things more efficiently. We dont want that, do we?

[CClaver27]

I loved this posting and AussieNeils detailed responses. (Can I bookmark this specific page somehow?). As someone who's sister-in-law (DC and with Certifications in Acupuncture, Nutrition, Herbal Medicine and HeartMath) I have had a boatload of advice over the last 30 years which started in the 90s as initially "stop using margarine" to more recently on "curing" my CLL through natural or homeopathic methods and supplements. I don't really use any except a small dose of Green Tea Extract and an occasional oral liposomal liquid vitamin C when I feel a cold coming on. All with my PP and CLL specialist knowledge. I initially had FCR treatment 8 years ago and it did the trick at the time (6 years on W&W prior to that), Ibutinib was just getting out the door for front line treatments through clinical trials. And now you have Acalabrutinib and Zanubrutinib. The BTK inhibiters do exactly what AN states with a targeted approach to getting a rogue cell to go through apoptosis which it's supposed to do normally. Yea there can be side effects (I find that this is a common argument to any drug or vaccine) and its different for everyone. I agree that eating healthy good diets with exercise thrown in is the key to long living and natural foods (real fish is better than taking fish oil supplements is better for you unless you have allergy's) like fruits and veggies are better for you than taking supplements I would think. While, I love my sister-in-law and even though she pushes a vegan diet and some supplements. she can't validate exactly what is in the supplements which some have been found to contain containments, pesticides, and sometimes lower levels of the active ingredients that they say they contain. (I have found Consumerlabs.com a reliable source that hires independent labs to test products and cites some studies on effectiveness of supplements. Subscription service). Do your research and look for scientific and fact based trials,

[neurodervish in reply to CClaver27]

Re: "Can I bookmark this specific page somehow?" Yes, just scroll to the bottom of Neil's comment, click the drop-down arrow next to "More" and copy the link. You can then open that link in a new tab and bookmark it.

How to copy and save a link to a comment.

[AussieNeil Partner Administrator in reply to CClaver27]

Thank you for sharing your awkward circumstances with your sister-in-law. It's what all of us experience with well meaning family, friends and acquaintances, but greatly magnified!

With respect to how to bookmark this post, that's best done using your browser's bookmarking feature. HU does however, provide a feature by which you'll be notified if anyone replies to this post. Just select "Save post" from under the parent post above. With respect to side effects, these can come with what naturopaths recommend too, as can drug interactions. If we are honest about how anything we take must work to have any effect, then off target effects are a given, as are potential reactions. Chemical reactions after all are how our bodies derive energy from what we eat, drink and breathe.

Neil

[Spike62]

For what it is worth, I have been regularly using EGCG (2000-4000mg) while keeping a watchful eye on my liver enzymes. In the roughly 1 year I have been using it, my WBC/Lymphs have remained below the numbers when I started, and my liver enzymes (ALT/AST) have remained in the low range of normal (roughly 20). So far so good. I do take Vitamin C but only less than a gram/day. My CLL specialist at Moffitt is fine with it. That said, I'm just a year into this and hope to remain in W&W as look as possible.