CLL and Vitamin C: I was thinking of getting... - CLL Support

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CLL and Vitamin C

Elle_V profile image
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I was thinking of getting some Vitamin C IV and read some posts from a few years ago that said vitamin C might overstimulate lymphocyte production. Now I'm second guessing myself. I found this article but it's a little over my head in terms of the science. Can anyone decipher it for me in simpler terms. It sounds like vitamin C is a good thing.

ncbi.nlm.nih.gov/pmc/articl...

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Stretch1 profile image
Stretch1

Thank you for this post - I've read that Intravenous Vit C will kill cancer cells and leave the normal cells alone in other types of cancer but never in leukemic cells - nice that they did the study in vitro and in vivo (mice-wise) - so where are the results of the clinical trials?

richutchens profile image
richutchens in reply to Stretch1

I did the C therapy IV for a year. It gave me a tiny boost in energy but drained my bank account. It was $250 US per treatment. Not worth it in my opinion.

AussieNeil profile image
AussieNeilAdministrator in reply to richutchens

Did you or your specialist notice any change in the rate at which your CLL was progressing?

richutchens profile image
richutchens in reply to AussieNeil

No change that my doctor noticed. I saw no physical results

crystalsky profile image
crystalsky in reply to richutchens

Would you mind sharing how many mg of vitamin C you received with each treatment, and how many times per week?

AussieNeil profile image
AussieNeilAdministrator

The K562 cell lines are NOT CLL cells but CML cells, a totally different blood cancer: en.m.wikipedia.org/wiki/K56...

Incidentally treatment of CML by imatinib/gleevec, is historically considered to be the first time treatment by (a tyrosine kinase) inhibitor drug changed a cancer to a chronic condition. We are still trying to achieve that with CLL, which has a far more complex genetic cause, sadly.

en.m.wikipedia.org/wiki/Ima...

Neil

richutchens profile image
richutchens in reply to AussieNeil

It was 3 times per week. I have no idea how many mg but it was in a large IV bag.

starsafta profile image
starsafta

When I started a clinical trial with Idelalisib and Ofatumumab as frontline treatment in 2015, I was told not to take any supplements. Of course, they want to make sure that any improvement is due to the study drugs.

I pushed for continuation of Vitamin D, because studies tend to show it has a positive effect with cancer treatment, and for the 1000 mg of Lypospheric Vitamin C that I've been taking for many years, because my compromised immune system makes me susceptible to infection. Lypospheric Vitamin C is not processed in the digestive system, so it is absorbed better and does not impact the kidneys. This allows for a higher dose than for conventional capsules. "You can't take it away from me," I argued.

The doctor running the trial gave in and allowed me to take these supplements. I have continued taking them through Idelalisib and now for 15 months of Ibrutinib as standard treatment. I have had excellent results with both drugs, and would be surprised if my response has been affected by the supplements.

crystalsky profile image
crystalsky in reply to starsafta

I have my husband on lyposheric vitamin C as well, only he takes 2000 mg in the morning, and 2000 mg at night. He also takes vitamin C in capsule form for a total of 10,000 mg vitamin C a day. Vitamin C is water soluble, therefore it needs to replaced every day. It can't build up in your body like a fat soluble vitamin can, so it's completely safe. Dosing to bowel tolerance is the standard guide for how much vitamin C your body needs.

His doctor knows what supplements he takes, but if it were up to him, my husband wouldn't be taking any. He actually said to us at his last appointment, regarding my husband taking zinc -- nobody needs zinc, you don't need to take that! And in the past, before he started treatment, we got into a debate about vitamin E. He clearly has no knowledge of vitamins and supplements or herbs for that matter. I would never rely on his doctor for that kind of information.

AussieNeil profile image
AussieNeilAdministrator in reply to crystalsky

Sorry, but I don't think you can claim that anything is 'completely safe'. Even when water soluble vitamins like this can't build up in the body, we need to be aware of drug interactions: mayoclinic.org/drugs-supple...

Vitamin C may affect blood sugar levels. Caution is advised when using medications that may also affect blood sugar. People taking insulin or drugs for diabetes by mouth should be monitored closely by a qualified healthcare professional, including a pharmacist. Medication adjustments may be necessary.

Vitamin C may affect blood pressure. Caution is advised in people taking agents that affect blood pressure.

Vitamin C may also interact with acetaminophen, acidifying agents, agents for Parkinson's disease, agents that affect the immune system, agents that increase urine flow, agents used for asthma, agents used for the heart, lungs, stomach or intestines, agents used for the teeth, eyes or the skin, agents used to regulate heart rate, aldose reductase inhibitors, antacids, antibiotics, anticancer drugs, aspirin, barbiturates...'

(my emphasis)

Neil

gp7591 profile image
gp7591 in reply to AussieNeil

AussieNeil- So- is vitamin C good or bad for CLL patients? I always thought that a moderate amount- say 500- 1,000 mg per day was actually good. Please let me know. Many thanks! -G

AussieNeil profile image
AussieNeilAdministrator in reply to gp7591

Vitamin C is an essential vitamin for our health. Whether boosting our intake via supplements when we have CLL is worthwhile or potentially dangerous probably depends on the individual and their particular form of CLL. More study is needed, but the risks/rewards probably aren't that significant or it would have been studied.

Neil

crystalsky profile image
crystalsky

IV vitamin C increases the amount of oxygen in the blood. Cancer cells don't survive in an oxygen rich environment. You are lucky if you have access to IV vitamin C treatment . I have searched and searched all our local doctors here, and no one offers it. It seems to be demonized, which is so absurd. The closest doctor where my husband could receive this wonderful treatment is an hour away.

For greatest effectiveness, the dose needs to be at least 50 mg. each session, and at least three sessions a week are needed when you begin. However, it's safe, and if we had someone closer, my husband would be doing it.

Jm954 profile image
Jm954Administrator in reply to crystalsky

Vitamin C probably increases the amount of oxygen via hydrogen peroxide. The only oxygen in the blood that is safe is that which inside the haemoglobin molecule in your red cells. Loose oxygen in the blood sounds dangerous and lots of people also take anti oxidants.

crystalsky can you provide a published reference for what you are promoting here?

crystalsky profile image
crystalsky in reply to Jm954

I'm not promoting anything! I'm simply saying I wish we had access to IV vitamin C, because we would do it. That's all I'm saying. There are no published reports of anyone dying from vitamin C. I certainly wouldn't depend on IV vitamin C to cure any cancer by itself.

Raglan profile image
Raglan in reply to crystalsky

I'm with Crystalsky - Considering that the drugs given for CLL are toxic along with the negative side effects that many of these drugs cause , which we read about constantly isn't it worth trying something that may have a positive effect. There are all kinds of research about the benefits of Vit C in general, not just for CLL. Seems like Drs in general don't know a lot about CLL. Unless someone is totally allergic to Vit C OR if there are definite proven reasons for not taking Vit C with the drugs one is taking OR if your kidney function isn't good enough would it not be worth to give VIT C a try? I'm starting my IV Vit C next week. We all have to put together a regime (with multiple pieces) that fit ourselves ... The problem with CLL treatments ... to me the standard treatments seems to be a cookie cutter approach .. one for all each step of the way... well I don't think we are all the same so wouldn't it be wise for each of us to research and access other options like Vit C, who knows there may be benefits without any bad side affects. I hoping so...

crystalsky profile image
crystalsky in reply to Raglan

Raglan, you've said it so much better than I did - "Unless someone is totally allergic to Vit C OR if there are definite proven reasons for not taking Vit C with the drugs one is taking OR if your kidney function isn't good enough ..."

I feel you are fortunate to have access to IV vitamin C. I believe it simply assists in making the immune system stronger so it can fight disease. Our immune system is what fights all pathogens and invaders, and disease. I believe the body is capable of healing itself if given the right "tools" as is in proper nutrition, vitamins, minerals, and possibly herbs to strengthen the body.

If we cut ourselves, our body under normal conditions, heals our cut. Why then can't our bodies heal disease? What stops it? What can promote it?

The new big buzz is CART-T cell therapy, which is using one's immune system to fight disease. Hmm, must be a viable way then surely, since the pharma companies are all over it.

Using vitamins and nutrition to build our immune system is a gentler way. Again, since I need to spell out exactly what I'm saying, I'm not implying someone on the verge of dead or critically ill could expect to have miraculous results from such protocols.

Although, there are stories out there where people were sent home to die, as conventional medicine said they could do nothing more for them, and they turned to nutrition and vitamins and survived beyond the short weeks they were told they had to live.

How did this happen? How did they get better? Why did they live and not die like the doctors assured them was going to happen. They didn't give up. They tried the one thing no doctor ever prescribes - over dosing on nutrient rich food.

Anyway, I'm probably going to get in trouble again, so I'm stopping here.

Raglan profile image
Raglan in reply to crystalsky

What you say makes absolute sense to me. Why wouldn't someone try something that could potentially help them. Im not saying Vit C is going to cure CLL but if it assists with a better outcome why not try if you can. It's a personal choice. There's lots of other alternative medicine that can potentially help too does it mean that we only take what CLL specialist say to take or do? I personally will not give up trying to help myself in any way that I can.

Vindicatrix profile image
Vindicatrix in reply to Raglan

Hi Raglan, I like your mindset on this and I have a similar attitude. Experiment and try as many and varied things that you can, as long as they are safe, no matter how stupid they may sound, to others. If it makes you feel good, (and it does with me) then it's doing you good as far as I'm concerned. All the best

Vindicatrix profile image
Vindicatrix in reply to crystalsky

Hi Crystalsky, I was interested in the comment at the end of your post, about people being sent home to die after being told that there was nothing else that could be done. After which they survived for longer than expected. My theory is that often when that happens, they were misdiagnosed in the first place. I do so hope I'm wrong. Regards. Ron

AussieNeil profile image
AussieNeilAdministrator in reply to Raglan

CLL treatment is far from a cookie cutter approach if you see a CLL specialist. It is carefully customised to your specific flavour of CLL. Just check out the suggested algorithmic approach to tailor the most effective CLL treatment to a given individual listed in figure 1 of the reference in this pinned post: healthunlocked.com/cllsuppo...

And that's not all of the options available. There's access to many more drugs in clinical trials through the top CLL research and treatment establishments.

In my opinion, based on vitamin C's patchy history as a cancer therapy, and in particular the lack of evidence of its efficacy in CLL, having IV vitamin C therapy is just like buying a very expensive lottery ticket where a bit of investigation shows that your odds of winning are very, very low. That doesn't stop people from buying lottery tickets and some people do win (at the expense of all the losers).

Perhaps you can post about your experiences later?

- What did it cost?

- Were you asked what medications you were on? Importantly, were you told of possible interactions?

- Did you notice any effects from the infusions during them?

- Did you notice any possible side effects subsequently?

- Did you notice any improvements in your general health, fatigue, energy levels and so on?

- What changes did you observe in your blood test results? Were there any shifts in your lymphocyte count, your platelets, your red blood cells/haemoglobin, your neutrophils?

- (added 21 Oct 17) Liver function tests ALP, ALT, AST

- (added 21 Oct 17) LDH/LD (Tumour burden indication)

- (added 21 Oct 17) Kidney function tests eGFR, BUN, Creatinine

- Did you notice any change in your nodes or spleen?

- If you have had a bone marrow biopsy or CT scan and have these later, what changes were noted?

We know the answers to these for approved CLL treatments, we don't know them for IV vitamin C, so you have the opportunity to fill in plenty of blanks.

Incidentally, this research reported early this year, indicates why high dose vitamin C has had such a patchy history:

sciencedaily.com/releases/2...

'Cancer researchers have homed in on how high-dose vitamin C kills cancer cells. Vitamin C breaks down to generate hydrogen peroxide, which can damage tissue and DNA. The new study shows that tumor cells with low levels of catalase enzyme activity are much less capable of removing hydrogen peroxide than normal cells, and are more susceptible to damage and death when they are exposed to high doses of vitamin C. '

Based on this research, (note please crystalsky ), determining whether CLL cells have high levels of catalase enzyme activity will give an indication of the likelihood of success with IV vitamin C therapy. This paper: ncbi.nlm.nih.gov/pmc/articl... did exactly this and found that "Forty-five percent of the (11 - Neil) cancer cell lines tested are not affected by ascorbic acid and hydrogen peroxide, respectively. Higher levels of catalase activity are found in cell lines that are more resistant to oxidative stress than in more susceptible cancer cell lines. This observation underlines the heterogeneity of cancer cells concerning their ability to prevent cell death induced by oxidative stress. Therefore, anticancer therapies based on increased generation of ROS are influenced in their efficacy by the antioxidative defence potential of cancer cells." (My emphasis)

I mentioned previously how our understanding of the susceptibility of cancerous cells is developing and how important this research is to finding cures - the above research is a good illustration of this.

If you are going to buy a lottery ticket, surely it makes sense to buy one where your odds of winning are higher?

Neil

Raglan profile image
Raglan in reply to AussieNeil

When I say cookie cutter approach its my opinion that CLL specialists don't seem to include alternative medicines like vit c ++ with the drugs they prescribe for all variations of CLL . I would like them to look beyond drugs as being the only solution.

AussieNeil profile image
AussieNeilAdministrator in reply to Raglan

But they have looked at naturally occurring compounds! Check out hematologyandoncology.net/f... and read of the range of Naturally Occurring Compounds as Candidates for Maintenance Therapy, noting in particular how highly vitamin C/Ascorbic acid rates. :)

The authors of that paper are Dr. Susan O’Brien, originally of M.D. Anderson Cancer Center and now at the University of California at Irvine. Dr. Kay is from, Mayo Clinic. Both are highly regarded CLL specialists.

Mayo Clinic have also taken out patents on Green tea used in combination with standard CLL treatments: freepatentsonline.com/y2014...

The issue is that when studies prove alternative treatments work, they become included in the range of accepted standard treatments...

Neil

Stretch1 profile image
Stretch1 in reply to AussieNeil

So CAR T, Inbrutinib and Venetoclax have no risk associated with their use? The odds in that lottery are much better? They certainly have been studied more in depth than IVC - wonder why that is -

AussieNeil profile image
AussieNeilAdministrator in reply to Stretch1

It's all about risk vs reward. Low risk, low (maybe no?) reward with IV vitamin C, higher risk, much higher reward with proven CLL treatments. We have thousands of patients who have shared how they have fared on proven treatments - both good and bad in this community and in the reports on clinical trials. We have one member - richutchens who has shared above that IV vitamin C wasn't worth it in his opinion. It will be interesting to see what Raglan experiences.

Raglan profile image
Raglan in reply to AussieNeil

AussieNeil i’m not looking at IV Vit C and Helixor in the same light as the proven treatments for CLL your referring to. I’m just hoping that I will have some benefit from them that will help me to have a better quality of life and help in prolonging the need for requiring treatment. I feel the low risk of having any bad side effects with Vit C and Helixor is another reason they are worth trying.

Besides Vit C and Helixor I’ve built a program for myself which includes eating mainly a plant base diet, not eating anything with white sugar in it , sprouted wheat grass, supplements, herbs, relaxing mediation and exercise+ . I put this together because all my hematoligist told me was to try to eat a balanced diet- That was not enough direction for me.

I will keep you posted. TC

PlanetaryKim profile image
PlanetaryKim in reply to Raglan

I'll be very interested in how your IV Vit C treatments go, Raglan. Good luck with that. :)

kim

Raglan profile image
Raglan in reply to PlanetaryKim

Thanks Planetary Kim.

I had my first IV Vit C treatment 2 weeks ago. Not sure if it was mind over matter but I seemed to have noticeably more energy. My next treatment is this week.

With the Vit C I had one vile of Helixor. Apparently they add one additional vile of Helixor with each treatment of Vit C until 6 is reach then reduce. If certain symptoms are produced sooner they cut back sooner on number of viles of Helixor

cancer.gov/about-cancer/tre...

helixor.com/integrative-can...

The Helixor I had was apple base mistletoe. I’m just learning about it.

There’s lots of info about Helixor. From what I’V read and was told Helixor has been used in Europe for sometime for cancer. The naturopath I’m going to offers it to most cancer patients. I feel that there is no harm in trying it with along with the Vit C

I’ll keep you posted.

PlanetaryKim profile image
PlanetaryKim in reply to Raglan

Very interesting, Raglan. Glad to hear you had a feeling of more energy! I hope that continues for you. I was not familiar with helixor before.

AussieNeil profile image
AussieNeilAdministrator in reply to crystalsky

Here's some references for those that want to read more, given you haven't supplied any:

From the National Institutes of Health -

Intravenously administered vitamin C as cancer therapy: three cases:

ncbi.nlm.nih.gov/pmc/articl...

Early clinical studies showed that high-dose vitamin C, given by intravenous and oral routes, may improve symptoms and prolong life in patients with terminal cancer. Double-blind placebo-controlled studies of oral vitamin C therapy showed no benefit. Recent evidence shows that oral administration of the maximum tolerated dose of vitamin C (18 g/d) produces peak plasma concentrations of only 220 μmol/L, whereas intravenous administration of the same dose produces plasma concentrations about 25-fold higher. Larger doses (50–100 g) given intravenously may result in plasma concentrations of about 14 000 μmol/L. At concentrations above 1000 μmol/L, vitamin C is toxic to some cancer cells but not to normal cells in vitro. We found 3 well-documented cases of advanced cancers, confirmed by histopathologic review, where patients had unexpectedly long survival times after receiving high-dose intravenous vitamin C therapy

:

At these concentrations, the vitamin is toxic to some cancer cells, possibly because at these concentrations the vitamin is a pro-drug for hydrogen peroxide formation in extracellular fluid. Accumulated data confer some degree of biological and clinical plausibility to the notion that high-dose intravenous vitamin C therapy may have anti-tumour effects in certain cancers. When all available data are considered, further clinical study as to safety and efficacy of intravenous vitamin C is warranted.

And from Wikipedia: en.wikipedia.org/wiki/Vitam...

'This (the original Linus Pauling) trial was criticized by the National Cancer Institute for being designed poorly, and three subsequent trials conducted at the Mayo Clinic could not replicate these results.'

A review of the three cases -

High Doses of Vitamin C Are Not Effective as a Cancer Treatment

Stephen Barrett, M.D.

quackwatch.org/01QuackeryRe...

Note the summary- 'Thus, three prospectively randomized, placebo-controlled studies involving 367 patients documented no consistent benefit from vitamin C among cancer patients with advanced disease. Moreover, high doses of vitamin C can have significant adverse effects. High oral doses can cause diarrhea. High intravenous dosage has been reported to cause kidney failure due to clogging of the kidney tubules by oxalate crystals. (My emphasis - I wouldn't consider a safe treatment would cause kidney failure.)

More from the National Cancer Institute: cancer.gov/about-cancer/tre...

In summary, it might help some cancer patients, but more research is needed. Until those trials are done on CLL patients, we won't know how effective it is for us.

Neil

crystalsky profile image
crystalsky in reply to AussieNeil

"(My emphasis - I wouldn't consider a safe treatment would cause kidney failure.)" I'd just like to add Ibrutinib can cause fatal bleeding, and death. Venetoclax can cause death. People are taking these everyday.

AussieNeil profile image
AussieNeilAdministrator in reply to crystalsky

And we share in this community our experiences of the dangers associated with drugs proven to be effective against CLL, that we also recognise as having potentially fatal side effects, either on their own, or when interacting with other drugs. We don't state them to be 'safe' and 'completely safe' as you have done for IV vitamin C. Chris Cllcanada , regularly warns members how dangerous he personally found Ibrutinib to be and of the serious interaction with ciprofloxacin or how doctors can be ignorant of these dangers.

From the Wikipedia reference I provided previously, there is a referenced case study of a death attributed to orally taken vitamin C:'In addition, one case has been noted of a woman who had received a kidney transplant followed by high-dose vitamin C and died soon afterwards as a result of calcium oxalate deposits that destroyed her new kidney. Her doctors concluded that high-dose vitamin C therapy should be avoided in patients with renal failure.[28]'

IV vitamin C may well be far safer than the acknowledged potentially dangerous FDA approved drugs for CLL treatment after we end our period in watch and wait, but it's effectiveness is unproven with CLL. I've personally had an infusion reaction from normal saline, which should be the safest substance you can administer by IV and I was interested to read that I am not alone in experiencing this: rxlist.com/normal-saline-si...

Anything we do to try and improve our lives with CLL carries with it a risk - as does doing nothing when CLL is seriously impacting on our continued good health. And that includes alternative medicine treatments, where you are perhaps accepting a lower risk from an unproven treatment, but the rewards are also much less.

Neil

crystalsky profile image
crystalsky in reply to AussieNeil

Okay, I guess I really need to be specific when posting here. Goodness. I'm not advocating that someone who had a kidney transplant go and take high doses of vitamin C. Common sense I guess should not be assumed. One person using high dose vitamin C after having a transplant does not equate to it being deadly to those who have not.

Also, I don't consider Wikipedia a viable medical source.

A research paper published in Cancer Cell on high dose vitamin C and cancer as explained in this article. It is not specific to CLL, but to cancer. Although, I suspect you will have an issue with this source and the publication Cancer Cell.

medicalnewstoday.com/articl...

AussieNeil profile image
AussieNeilAdministrator in reply to crystalsky

The Wikipedia reference to a death attributed to high dose oral vitamin C was to a case study from The New England Journal of Medicine. Surely that's an acceptable reference? The woman who died was taking 2 grams of vitamin C per day for the 3 years prior to her kidney transplant, which is not a particularly high dose. Far more relevant to our community, are known interactions with commonly taken drugs, which you have not acknowledged. Drugs.com states 'A total of 137 drugs (1514 brand and generic names) are known to interact with Vitamin C (ascorbic acid).': drugs.com/drug-interactions... Please appreciate that if you state something to be 'safe' and 'completely safe', then people considering trying it are unlikely to think it important to list the drugs they are taking, though I would hope that the person administering it would check first...

I have absolutely no issue with your reference to the research paper published in Cancer Cell - in fact I believe that article was previously posted about here. But we need to bear in mind that that research is about vitamin C in combination with standard treatment. From the article 'However, a new clinical trial tests the effect of high-dose vitamin C in combination with standard treatment on health outcomes for patients with cancer.'

Our scientific understanding of cancer has developed to the extent that we now appreciate that successful treatments are specific to the body cell that has become cancerous, or the cellular mechanisms involved if they are shared in different cell types. That explains why conventional treatments for other B-lymphocyte cancers don't necessarily work for CLL - different cellular mechanisms. This is why we need to be very cautious about assuming that a treatment that works for one cancer, conventional or alternative, will also work for CLL. Cancer is a very complex field and I consider that it is naive to think that given we can't design a drug that will selectively target just CLL cells and leave healthy B-lymphocytes alone, we'll be able to find a natural compound that can do this on its own and without side-effects.

Neil

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to AussieNeil

Then we return to Dr. Susan Leclair's statement 10 years ago, that Vitamin C in high doses stimulates B cell growth... not really what we want in CLL.

Thanks to Nick for posting this to Macmillan, in 2012

quote

SUSAN LECLAIR

"Vitamin C does seem to stimulate lymphocyte activity - which was one of the reasons that Linus Pauling thought that it was so good in the prevention of malignancy. The flip to that, of course, is when the malignancy is in the lymphocytes and then it is not a good idea to stimulate them any further than already are.

One of the issues then is the fact that we all need vitamin C to live. So - what to do. I would stick with the printed recommended daily allowance and not go too high above that. Does that mean I don't gorge on fresh oranges when we get them? No - but I don't do it on a daily basis either."

SUSAN LECLAIR

"In essence, you do have that correct. vitamin C does stimulate the immune system and several researchers claim that too much of it can be harmful to CLL patients. If you google vitamin C and leukemia, you will get several hits about this. One very good overview is: cancer.gov/newscenter/press...

Much of the work on anti-oxidants show that they have several different pathways of action. Is it possible that one of them MIGHT be better for patients with CLL than others? Possibly but that is unknown at this time.

I think that most researchers would still rely on the "balanced nutrition" rather than the skewed nutrition used by Pauling and others. (Remember, Pauling did die of cancer.) end quote”

💉💉💉

More from Dr. Leclair on blood: patientpower.info/bio/susan...

Previously on HU... VitC et al: healthunlocked.com/cllsuppo...

~chris

Stretch1 profile image
Stretch1 in reply to AussieNeil

I find it naive that one does not consider the profit motive concerning a natural substance vs a synthetic -

AussieNeil profile image
AussieNeilAdministrator in reply to Stretch1

I find it naive that natural substances are thought to be provided free of profit. The supplement/herbal remedy business may not be as large as the synthetics market, but it is still huge with very well organised lobbyist groups. That is why this market is still far less regulated than the synthetic market. The lack of regulation does provide the opportunity for lower costs, but also profiteering with substitution, contamination and other quality control issues:

healthunlocked.com/cllsuppo...

Vindicatrix profile image
Vindicatrix in reply to AussieNeil

My feelings on all of this Neil is, that you can do, little, some, or extensive rearch on this, it's a personal choice. I don't seek to minimise this at all. However at the end of the day, I really do believe, that if you feel your choice of treatment, especially if it's not a conventional one, is doing you good, then in my book, it is. For some people it's a mind thing. All the very best. Ron

Jm954 profile image
Jm954Administrator

I would be very cautious about using this as evidence to take large amounts of Vit C. This paper is a first prinicples experimental study, not directly clinically relevant, and done with ACUTE leukaemia cells (inlcuding the blast cells of CML crisis) that are very rapidly growing unlike our CLL cells.

Quote - "Addition of 280 and 2800 μM of AA, which are approximately 6 and 60-times higher than the physiological level, produced significant amounts of H2O2........and reduced the viability of all myeloid and lymphoid leukemic cells tested". I'm not sure why they are surprised - H2O2 is hydrogen peroxide, a strong oxidizing agent, used commercially as the active ingredient in bleach and other household cleaners. There are other papers showing that H2O2 (+/- vitC) induces cell death but it would be very non specific and not targeted at leukaemia cells, causing lots of other cellular damage.

It would be unwise to extrapolate any conclusions from this paper and other similar ones that would have any relevance to CLL in the clinical setting.

AussieNeil profile image
AussieNeilAdministrator in reply to Jm954

Interestingly one of the mechanisms by which our white blood cells kill pathogens is by generating hydrogen peroxide and using it to cause oxidative damage to the pathogens! Cell production of hydrogen peroxide is also a signalling method to attract white blood cells to damaged tissue. Some good examples of how the right amount of a dangerous chemical in the right place can keep us healthy: sciencedaily.com/releases/2...

ncbi.nlm.nih.gov/pubmed/194...

Elle_V profile image
Elle_V

Thank you all for your input. I'm in Canada and IV Vitamin C is widely available through Naturopathic Doctors but quite expensive, about $180 per 50 grams. I think I will hold off for now.

BeckyLUSA profile image
BeckyLUSA

It appears that doctors and health care specialists in general cannot seem to get in the same page about vitamin and mineral supplements. I have had some doctors tell me I am “peeing” my money away while others seem to think some of them work. I personally think it works for some but not for all. And I also think that sometimes it is mind over matter, a placebo effect for some. I am not bashing supplements; I take some, and I feel like some of them work. But that’s just my opinion. Since supplements are not put through the same rigorous testing as other drugs, we will probably never know.

gemit2000 profile image
gemit2000

Not on the topic of IV Vit C, but wanted to mention adding 200mg of vitamin C when I take h 800 mg of Green Tea (50% EGCG) when I wake up (along with another 800 mg with Fish Oil a few hours before dinner) to increase EGCG bioavailability - this based on research from NCBI-NIH:

["...we were able to reach the highest ever level of EGCG in plasma with the combination of EGCG (purity > 94%) without caffeine taken after an overnight fasting period together with 200 mg ascorbic acid and 1000 mg omega-3 fatty acids from salmon".]

AussieNeil profile image
AussieNeilAdministrator in reply to gemit2000

Interesting paper: ncbi.nlm.nih.gov/pmc/articl...

Note: 3.2.2. Intake with Empty Stomach

One oral dose in the morning after an overnight fasting period [17,18] at least 30 min before breakfast, and a second dose in the afternoon with fasting period of at least 4 h, at least 30 min before dinner, seem to be necessary to reach high plasma levels of EGCG

Problem is if I take it on an empty stomach, I get bad nausea...

gemit2000 profile image
gemit2000 in reply to AussieNeil

I hear you. Actually I feel you is more like it, cause at times I feel what you feel. However the nausea hasn't been debilitating, often it passes, and if it doesn't then I eat.

(I didn't "like" your comment concerned I'd be liking that you got nauseous).

thisishiswife profile image
thisishiswife

I see some people are taking supplements in order to increase oxidation, others are taking supplements in order to reduce oxidation.

Elle_V profile image
Elle_V

Why is Vitamin C specifically not safe for CLL? There are so many posts above, maybe I missed it?

crystalsky profile image
crystalsky

I'm adding to this discussion with the following article which is sourced from the journals Cell and Nature. Just sharing for the information. Decide for yourself.

How Vitamin C “Puts the Brakes on” Leukemia

:

In a study conducted at University of Texas Southwestern Medical Center and published in the peer-reviewed scientific journal Nature, researchers found that vitamin C helped to slow the development of leukemia by re-activating an enzyme that stops leukemia cell from growing and spreading. ..... Read the remainder at:

naturalhealth365.com/vitami...

AussieNeil profile image
AussieNeilAdministrator in reply to crystalsky

To help people decide, I read your referenced article and the included references to the original research and note the following:

Your reference states 'TET2 mutations currently account for 42,500 cancers yearly within the United States. Fifty percent of patients with chronic myelomonocytic leukemia, 30 percent with “pre-leukemia” and 10 percent with acute myeloid leukemia have TET2 disorders.' The referenced research is on Flt3ITD, which is an Acute Myleoid Leukaemia cell line.

There are two hematopoietic stem cell lines - the myeloid and lymphoid lines and this promising research about vitamin C helping slow the development of leukaemia relates to the myeoloid stem cell line - the one on the left of this diagram:

upload.wikimedia.org/wikipe...

CLL develops from the lymphoid stem cell line - the one on the right and a bit of Googling will find phrases such as:

"TET2 has not been detected as a mutational cancer driver in this (CLL) cancer type"

"TET2 expression and mutations have been less studied in chronic lymphocytic leukemia (CLL) and only rare cases of this disease showed TET2 mutations."

The most promising reference was this: hindawi.com/journals/bmri/2... which states:

"TET2 is involved in a variety of hematopoietic malignancies, mainly in myeloid malignancies. Most mutations of TET2 have been identified in myeloid disorders, but some have also recently been described in mature lymphoid neoplasms.

The relevance of TET2 overexpression in CLL remains unknown. Given the role of TET2 in the conversion of methylcytosine to hydroxymethylcytosine, it could be related to epigenetic mechanisms." (My emphasis)

So my take on this is that low vitamin C serum levels raises the risk of development of myeloid malignancies and might also do so for a small percentage of CLL malignancies. Once CLL develops, higher vitamin C serum levels might only help those in the "rare cases of this disease (which) showed TET2 mutations".

Perhaps that's why richutchens and his doctor didn't see any benefit after a year of IV vitamin C infusions. Maybe Raglan will do better and we'll actually hear of someone with CLL having a worthwhile response, but the research doesn't look all that encouraging for the vast majority of us.

Maybe, based on the research you've highlighted, some enterprising doctor will actually check for TET2 mutations in the leukaemia cells and only offer IV vitamin C infusions to those that have this and may be more likely to respond. If that research included CLL patients, then we might finally have some much needed evidence on when IV vitamin C is likely to work for us!

Neil

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