CLL and IV Vitamin C

[Maazi]

Hi All

Is there anyone suffering for cll taking IV vitamin C ?

Thankyou

[PlanetaryKim]

I took a lot of high-dose IV Vitamin C for 3 months last year for a 2nd cancer - anal cancer. In some literature, IV Vitamin C is contraindicated for leukemias including CLL. So I kept a close eye on my blood work to make sure there was no indication of CLL progression during that time. And everything was fine. I was doing 100 g 3x weekly. It didn't have either a positive or negative effect on my CLL, or apparently on the anal cancer I was using it for. So I did chemo-radiation treatmetn for the anal cancer. CLL continues to be well controlled for me with ibrutinib.

There is lots of credible anecdotal information about IV Vitamin C being beneficial for solid tumor cancers. I don't think it is the most logical naturopathic treatment for CLL.

kim

[Maazi in reply to PlanetaryKim]

Thank you Kim,

You are correct, there is little research on vit c and cll. I was more hoping for a success story than anything else. Currently we are in wait and watch and have been for the past 3 years. We have tried to clean up the diet to fresh fruit and veg with cheat days, not sure how much this is helping. We try to follow as best we can the gerson therapy. Have you heard of it ?

Is there anything you have tried other than ibrutinib that you feel is helping?

Also, at the sometime of cll diagnosis we were diagnosed with Chronic hepatitis B which could have been a trigger for cll.

Maz

[Cllcanada Top Poster CURE Hero in reply to Maazi]

Vit C can increase B cell counts, according to Dr. Leclair a CLL specialist in blood... not sure this applies to IV...

I got the most effective reduction in CLL by twice daily exercise, in my case brisk walking... it started my CLL counts to retreated over about 18 month and I lost a huge of weight .

HepB needs careful management in CLL. I recommend you start a quest for a doctor well versed in CLL, often refered to as a CLL specialist. If you give your nearest large ciy, other members can perhaps make specialist recommendations...

Welcome to the community... 😉

~chris 🇨🇦

[Maazi in reply to Cllcanada]

Thank you Chris,

With at most a fruit and veg diet we have experienced a reduction of weight from just over 12.5st to 10.5st. Asthma has also improved with the use of an inhaler to a minimal at worst case scenario. However the lymphocyte count is stiĺl rising

Thanks

[Cllcanada Top Poster CURE Hero in reply to Maazi]

Lymphocytes counts tend to rise... but under 30K it isn't an indication of CLL progression so much...

Need to get your B12 levels checked and monitored by your GP, and while at it ask for folate and VitD to be tested.

Patients who switch to a plant based diet, may need B12 injections, or sublingual supplements. Best to work with your doctor to keep things inline...

~chris 🇨🇦

[Maazi in reply to Cllcanada]

Thankyou Chris,

Yes will get vitamin b12, folate and D checked on next haemotologist visit. Lymphocyte count is 130k and rising. In general everything seems to ok other than this count which is beginning a little worrying that it's still rising especially after the dietary changes. As mentioned earlier we hoped iv vit c may have helped but not holding our breath.

Maz

[AussieNeil Partner Administrator in reply to Maazi]

I don't recall a single success story reported here for IV vitamin C in reducing the CLL tumour burden. Two members reported no change in their CLL despite a concerted effort. It's also expensive. From my research, you'd need to have a rare case of a TET2 mutation in the CLL cells to potentially gain any benefit.

Gerson Therapy was formulated about 80 years ago and well before our scientific understanding of cancer. Independent studies have not confirmed the claimed successes in treating cancer and that's in part why there are only two treatment centres in the world outside of the USA, where the therapy originated.

I think you'll find this post enlightening: healthunlocked.com/cllsuppo...

Losing weight and eating healthier, with larger serves of fruit and vegetables can only help your overall health, but improving fitness arguably will give you the most benefit: healthunlocked.com/cllsuppo...

Neil

[PlanetaryKim in reply to Maazi]

For me, just staying as physically active as possible, and eating reasonably well is my 2-pronged approach to trying to maintain the best health I can. I had Hep C for 45 years (1970-2015). I suspect that laid the groundwork for the CLL. But when I did my 12 weeks of Harvoni treatment in 2015, curing me of Hep C, that's when my CLL blew up from an undiagnosed stage 0 (I am guessing) to extreme progression in space of first 6 weeks of treatment. There have been many anecdotal reports of the new and very effective Hep C drugs having significant (and undesired) impact on immune function - in some cases ramping up with auto-immune illnesses, in other cases ramping down allowing cancers to come forth. At least I'm still here - and doing well at the moment!

[Klg328 in reply to PlanetaryKim]

PlanetaryKim,

Hello. I was very interested in your experience with having HCV and then CLL. The same thing happened to me. I was treated in 2014 with Olysio and Sovaldi; no more HCV. But then shortly after diagnosed with CLL and have been on W&W since. I did COPIOUS amounts of research (I'm a nurse) and spoke with several physicians about any possible correlation between the 2 diseases and they all said, "no, they weren't aware of any". But it has to be! Your post was the first I've heard and I'm so glad to know I may not be as crazy as I thought...ha. However, I guess how we got CLL isn't as important as going forward. I am extremely blessed and thankful that I am 13q deletion, mutated. Thank you for posting your experience. And wishing you many more good days ahead!

[PlanetaryKim in reply to Klg328]

Hi Klg328. I don't think you're crazy to draw a connection between your HCV treatment, and your CLL being diagnosed shortly thereafter. I don't know if you're aware of the Hep Forums (forums.hepmag.com/), but there are many members commenting on profound disabling illness that developed for them during treatment with the new Hep C drugs... and has remained post-treatment. In most cases the discussion is about auto-immune problem they did not have pre-treatment: rheumatoid arthritis, lupus, CFS. But some people have reported cancers, or return of cancers that had been in remission. In April 2016, scientists advanced the notion that Harvoni (and presumably any of the Sovaldi-based new drugs) temporarily disables the body's immune surveillance, which is our bulwark against cancer.

kim

[Klg328 in reply to PlanetaryKim]

Hi Kim,

I was really not aware of the post-issues. Once I was "cured" from the HCV, I didn't pay much attention to the forums, as I did before. Interesting...I do know that I am a walking basal cell carcinoma. It's a wonder my face still looks normal...LOL (good plastic surgeons)

[livinglifewell in reply to Klg328]

KLG, I'm a nurse too. Ironically, I was working oncology when I got diagnosed.

[Farrpottery in reply to PlanetaryKim]

Vitamin C is a natural blood thinner. It would seem to be contraindicated when taking Ibrutinib.

Farrpottery

[livinglifewell in reply to PlanetaryKim]

Hi Kim, I had good success with high-dose green tea extract (decaffeinated). I followed a study done at Mayo Clinic in Rochester, Minnesota. I wasn't eligible for the study because my SLL was more advanced than W&W but she figured out my dose calculation. We purchased the product from Vermont and I took 1,875 mg daily for six months. I had liver enzymes checked monthly and they stayed normal. I had a CT scan before and after. Every tumor shrunk significantly. I had zero side effects from the green tea extract.

[PlanetaryKim in reply to livinglifewell]

good to know!

[Raglan]

Hi Maazi

I had about 15 IV Vit C treatments. My bloodwork didn’t show a change in CLL but I had more energy and my mind was clearer after each treatment.

I continue to try different things. Currently taking organic sprouted wheat grass, custom protein supplement, vegetable juices along with other supplements while doing my best to eat well.

I feel the benefits from walking, rebounding on mini trampoline, infrared steamer, taking long baths. The more active I am the better I feel - but I do have to push myself to move.

I’ve been going to regular naturopath but I’m going to see a naturopath that specializes in oncology to see what his approach is with CLL.

All the best!

[F550]

I was diagnosed in October of 2017 with SLL (trisomy 12). The doctor told me that my immune system was compromised and to be cautious around people with infections. I had a physician friend who practices integrative medicine. I went to see him, simply hoping to feel better and healthier. He gave me a battery of blood and saliva tests and had me start on a lot of supplements and eat a more vegetarian diet. He also recommended vitamin C infusions "for the cancer". They were not fun. The nurses had trouble with the i.v.s. In the end they did not seem to change anything. My disease progressed, and I took my first ibrutinib pill last night.

The supplements and dietary changes did help. I feel better, more energetic and trimmer. I went from 175 lbs to 160 lbs and lost a lot around my waist.

Mike

[NoMoRLS]

I was vegan for 3 yrs after breast cancer surgery and was in remission. Then I got very sick like the flu and that's when they found my CLL. I was exercising daily and biking miles on weekends for cardio. I was completely in shock over the cll. My cll is 13q deleted and 25% in bone marrow. Since then my immunity has been awful and just recouping from pneumonia. Trying to get ivig but insurance still wont cover it. Currently still working full time and collapsing on weekends. Exhausted much of the time with intervals of feeling fine. There is nothing the oncologist can do for me. I started juicing greens again and it gives me a nice energy boost. I've read countless articles and studies. The cll wont kill me before those 2nd-ary infections will. It took 3 rounds of antibiotics to clear up the pneumonia. Personally I've all but stopped going to my onc. Why? My numbers go up and down. When I get sick I just go to my GP. Then if they think I need to see my oncologist then I go. And when I do see the cll specialist it's always the same. Your numbers aren't that high..just get some rest. Sheesh. Special diets and exercise havent changed anything for me. Just good practice to lower weight and prevent other problems from occurring. All the best to you.

[Fiona2014]

While my knowledge regarding alternative therapies is limited, I am somewhat guarded in terms of what I'll subject my body to. My local paper noted some challenges with Vit C IV treatments (individuals paying large sums of money - while presenting at end stage of life). I noted some literature citing cautions as well (physical focus)

1) Need to provide clear information to patients: The effect of adding IV vitamin C (IV C) to chemotherapy is unknown in terms of overall efficacy and could potentially reduce treatment efficacy despite any positive effects

2) The renal system rapidly excretes IV C; thus, adequate kidney function is required for higher doses. Use caution when giving IV C to patients with a history of kidney stones or oxaluria.

Curr Oncol. 2018 Apr; 25(2): 139–148.

Intravenous vitamin C in the supportive care of cancer patients: a review and rational approach

E. Klimant, MD,* H. Wright, ND,† D. Rubin, ND,† D. Seely, ND MSc,‡ and M. Markman, MD§

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

[Goola]

I was able to keep my white count under control with IV C for a few years. It is no longer effective for the count or keeping me feeling well. I am looking at a few other alternative solutions, and right now having a great result from IV ALA.

[AussieNeil Partner Administrator in reply to Goola]

Welcome Goola,

Given you are the first respondent that I recall claiming a benefit from IV Vitamin C in CLL management, what did you actually experience? You mention that it kept your white count under control, so I presume you just saw no change - that is no significant and sustained drop? Do you have some actual lymphocyte count figures over the few years until it was no longer effective? Were you aware of any changes in your overall tumour burden, such as a reduction in the size of swollen nodes or spleen if these were swollen?

By ALA, I presume you mean Alpha-Lipoic Acid? According to the Drugs.com ALA reference:

"Cancer

There is limited information available concerning ALA's role in cancer. Its mechanism of action and anticarcinogenic and cytoprotective effects have been addressed.

Clinical data

Research reveals no clinical data regarding the use of ALA in cancer treatment."

The "limited information" with respect to cancer treatment refers to a 1996 paper written in Slovak: Dovinová I. α-Lipoic acid—a natural disulfide cofactor and antioxidant with anticarcinogenic effects [in Slovak]. Ceska Slov Farm. 1996;45(5):237-241.9011310

drugs.com/npp/alpha-lipoic-...

The only other reference from what I consider a reputable (evidence based) site is from Cancer Therapy Advisor, which mentions some promising results for some cancers in some limited case studies, but not CLL: cancertherapyadvisor.com/fa...

Neil

[Goola in reply to AussieNeil]

High C with lots of other nutrients kept white count down to 50k ish while giving great relief from fibromyalgia pain. I am 5 weeks in with IV ALA and overall the CFS is noticibly better and waiting for WBC tests due in the next few weeks. It must be down. I feel the shift of wellness. At 100 k I was feeling very poorly. I am grateful for all the info shared here. I am willing to do and try almost anything to stay away from chemo and allopathic choices. Perhaps not a popular choice here, but a decision handed down directly through Shamans and other teachers for which I work with, believe in and trust my own knowing.

Thank you for all the effort in pulling info and statistics- I’m always curious about mainstream data. It’s been 10 years, some very rough territory and chronic illness but I believe in my path. Thank you again and Blessings in your journey. Sat Nam

[AussieNeil Partner Administrator in reply to Goola]

I can appreciate the challenges of living with pain associated from fibromyalgia/CSF, but don't think you are being well served currently healthwise. Your IV treatments seem to be more in line with trying to improve your quality of life from the impact of fibromyalgia/CFS, than your CLL, yet the latter is likely to cause you more serious health conditions and a reduction in life expectancy than fibromyalgia/CSF, particularly given the findings of this observational study as reported in this independent overview:

nhs.uk/news/cancer/alternat...

You might find reading about the findings of a pilot study into the efficacy of Myers' IV cocktail (which contains 2.5 grams of vitamin C) , from the Journal of Alternative and Complementary Medicine. "This first controlled pilot study established the safety and feasibility of treating FMS with IVMT. Most subjects experienced relief as compared to baseline, but no statistically significant differences were seen between IVMT and placebo." ncbi.nlm.nih.gov/pmc/articl...

With respect to you thinking your WBC 'must be down', you'll find that the consensus in our community is that lymphocyte counts (which is what you should be tracking, not your WBC), do not correlate with how well we feel. We have members with quite low lymphocyte counts (under 20k) struggling with severe fatigue and others with counts well over 100k feeling fine! That fits in with research findings that when CLL cells are in our blood supply, increasing our lymphocyte/WBC count, they are in their dormant phase: healthunlocked.com/cllsuppo...

It's thought to be the cytokine and chemokine messenger molecules that they produce in their active nodal existence that cause fatigue symptoms.

You might like to track your blood test results using a spreadsheet and educate yourself on the relevance of your different blood counts:

healthunlocked.com/cllsuppo...

Don't forget to take advantage of the collective wisdom of our over 11,000 members. Perhaps you could post about the challenges of living with both Fibromyalgia/CFS and CLL and find out how others with these two challenging health conditions manage.

Neil

[Goola in reply to AussieNeil]

Thank you AussieNeil - I am always open to learning and evaluating. 2.5 g of C is a far cry from 75-100 with double pass ozone therapy. I agree with several of your points and do look at my blood quarterly. Part of my joining here is to learn more about the technical aspects of understanding blood work. I have had great relief from enlarged lymphs through essential oil applications and vibration therapy.

[AussieNeil Partner Administrator in reply to Goola]

There is no credible, peer reviewed evidence to support the use of ozone as a type of medical therapy. See: healthunlocked.com/cllsuppo...

A very small study concluded that vibration treatment was effective in improving mobility in patients with leukemia and lymphoma receiving chemotherapy. (My emphasis).

communityview.lls.org/artic...

Neil

[Goola in reply to AussieNeil]

AussieNeil I am grateful you are so well informed on allopathic. My heart is always open to learning and take the time to research where my interests focus.

Are you pro chemo? We walk on opposite ends of the world and view Her with such different eyes. I find these exchanges gifts for learning.

I have a machine that provides full body vibration and supports lymphatic drainage without the additive of chemo. It’s not for everyone but a great way to feel better.

Please share your views on RSO, NAD and ESSIAC? What about pain control?

Thank you sharing ~ Best

[AussieNeil Partner Administrator in reply to Goola]

I'm pro whatever has a solid evidentiary basis of having a high probability of delivering a long lasting CLL remission and hopefully a cure with minimal risk. Thankfully increasingly, that no longer means a chemoimmunotherapy treatment. For some of us with the right prognostic markers, there is strong evidence that a high percentage can have very, very long remissions, effectively a cure on FCR chemoimmunotherapy and for many of us, "chemo" treatments are the only proven option because of where we live or what we can afford.

Anyone looking into non-allopathic treatments for CLL needs to appreciate that CLL is a rare cancer. As you would expect, studies have shown that having a specialist that sees lots of CLL patients translates into living several years longer than if you see a general cancer specialist. CLL treatment developments have been advancing so rapidly lately, even blood cancer specialists have a hard time keeping up, so trying to find knowledgeable expertise elsewhere is extremely difficult and typically results in treatments for which there is little to no evidence of effectiveness as in your case. To illustrate, here's a paper by recognised CLL specialists which includes a reasonable coverage of a range of promising natural treatments. None of the treatments you've tried or mentioned are included!

hematologyandoncology.net/f...

I've summarised my research into suggested non-allopathic treatments for CLL in a reply to this post:

healthunlocked.com/cllsuppo...

RSO is covered (cannabinoids might prove useful for other cancers, including other blood cancers, but for CLL, its usefulness seems to be limited to pain relief and - during treatment, nausea control).

There's no evidence of Essiac tea having cancer curing properties, full stop. In fact there's concern it could actually boost the growth of breast and prostate cancer!

cancerresearchuk.org/about-...

I've never heard of NAD in connection with CLL, though I notice that there is one reputable small study showing promising results for cardiovascular health in older people.

Neil

[Goola in reply to AussieNeil]

Thank you so much for all this added info. I would like to step back and review. I know I will have more questions. Greatly appreciate your time and knowledge.

[showdog in reply to Goola]

Glad to hear natural things have worked for you. They want me on a drug but reluctant. I feel good and am getting a second opinion. Just diagnosed this month.

[Goola in reply to showdog]

I won’t rule out chemo but I’ve been able to avoid it for over 3 years (11years since diagnosis) and will continue on my path. I’m grateful for the time to learn and experiment. This is a great place to learn, and perhaps one day reevaluate but we are all on our own journey. Showdog listen to your soul and take control. Your body, your life. No judgments.

Sat Nam

[showdog]

Thanks