Supplements for CLL
Posted by: Denise on: January 25, 2017
My two pill boxes. (My daily/weekly pills will not fit into one box.) And most of my pill bottles. I keep a dispensary of back-up bottles (not seen) in my cupboard.
I recently was emailed a request to update my CLL supplement list. My list of supplements is long, but not everything I take is because of CLL. I’m 61 (and a half), so like most people, I have other issues as well. I will therefore give a reason for each supplement I take.
The first is technically not a supplement. It is a glass of ACV (apple cider vinegar), lemon, and honey. To be more specific, a ‘splash” of ACV, half a squeezed lemon (or 3 tablespoons of ground whole lemon my husband makes in the vitamin with water and ice and saves in a jar in the fridge–nice hubby, eh?), and about 1 tablespoon raw local honey (we buy at farmers market or health food store). Add filtered water and stir. Drink with a straw. Rinse and brush teeth after drinking. It’s a great way to start the day!
Vitamin D3
5000 IU in the morning
2000 IU at lunch and dinner
for a total of 9000 IU.
People with cancer tend to be low in Vit D3, which we normally get from sun exposure. Mine was 19 when first tested.The goal for those with cancer is to get their vit d3 hydroxy test up to somewhere between 80 – 99. Mine has been as high as 100. Test frequently, and drop down the amount if you get too high. (I used to take 10,000, and now I’m down to 9000/day in divided doses.)
Ubiquinol
(a form of Co-Q10)
200 mg/breakfast
This is good for the heart. Both my parents have/had heart issues. I take this as a preventative. (I think it’s good for everyone, but do your own research.)
Krill Oil
667mg @ breakfast
this is the Omega 3 oil that everyone should take. Many people take fish oil. I prefer the krill. No fishy smell.
Astaxanthin
4mg/breakfast
This is one of those super antioxidants. If you take it during the summer, it protects against sun burn. (Doesn’t do the whole job, still have to be vigilant about that.) I take this one for general health.
B-17/Laetrile
500mg- bfast/lunch/dinner (total 1500mg)
This is an anti-cancer pill. Laetrile (found in apricot seeds, apple seeds and other natural parts of fruits) kills cancer cells and leaves normal cells alone. You may read that it’s dangerous because it is cyanide. Only half of that is true. The pill does act as cyanide in the body, but only when in contact with those cancer cells. I’ve been taking this dose since 2007 and I’m just fine. My source is tjsupply.
Curcumin
1000 mg/total, 500 at bfast and dinner
There are articles about curcumin and CLL, and other cancers. No side effects, and I believe this helps.
Vit E tocotrienol
50mg — just three times a week, @bfast
(I dropped to this level when I started taking the next two pills)
Vit E succinate
200 IU daily
Biotin
10,000mg daily
(The above two — biotin and Vit E Succinate — are part of a prescription from an alternative doctor to help regrow my ever-thinning hair. Not sure how well it’s working for the hair, which is doing okay for now, but my CLL numbers do well while on this also. While this is a prescription from a compounding pharmacist, both ingredients are available either at health food stores or online.)
Allicidin
one pill each day @bfast
This is a garlic extract that is supposed to boost your immune system. No icky garlic smell, small pill, but significantly more expensive than garlic pills. If you’re trying to cut costs, I’d try garlic pills as an alternative.
Olive Leaf
500mg divided between bfast and dinner
Pau D’arco
3.3 grams divided betweeen bfast, lunch, dinner
there are articles about pau d’arco being a leukemia fighter. The 3.3 grams is 9 pills/day (three at each meal) Not sure if this is a winner, but I consider it to be part of my arsenal.
Nettle Leaf
2610 mg/day (six pills total– two pills each meal)
This is another leukemia fighter. Do a search on “nettle leukemia” and read what you find. I’m committed to these as well.Neither this nor the pau d’arco are that expensive.
Digestive Enzymes
I use Life Extension. Other brands might be good. I take one/meal. As you (ahem) get older, you lack the enzymes to properly digest and assimilate (absorb) your food and supplements. I believe that my CLL came largely as a result of lifelong chronic bad digestion. Digestive Enzymes are on my must-take list.
Biosil
This is a silicon, and one of those hair-skin-nails pills I take for my beloved hair. : )
Does it work? I know my hair started falling out in sheets when I stopped it. So, despite how expensive it is, I keep it on my list.
Peak Immune
1 pill, 4X day (bfast, lunch, dinner, bedtime). This one is on my MUST TAKE LIST for CLL. I used to have problems with low neutrophils. When neutrophils get low enough, it can be life threatening. This is because neutrophils are on the front line of fighting infections. So when they tell you you won’t die of the CLL, but “with” it, it could mean you die of a secondary infection. So check your neutrophils. If the number is low, take these. I get them for $35/bottle from Vitacost, cheapest when you’re on automatic re-purchase. I’ve paid as much as $46/bottle. When you start you take 12 pills/day, and work your way down to 4/day. I take extra when I’m ill or very stressed. I believe in these. When I stopped taking them, my neutrophils tanked. When I restarted, up they went. (The medical establishment prescribes neupogen, which is not that safe, look it up.))
Amino Acid Complex
4 capsules, divided…2/bfast, 1@ lunch and dinner
These are for my low protein count. I take this both for CLL and for my hair. My protein tends to the low side, despite the fact that I eat red meat once every week or two.
Selenium
200mg @dinner
100mg @bfast
I’ve read about selenium having anti-cancer properties. I can’t really measure how well this is working for me. However, it’s on my list as I don’t take a multi-vitamin.
Calcium
250mg @dinner
Magnesium
1000mg divided @brast/dinner/bedtime
Change-o-life
2 pills/2X day (bfast and dinner)
I started it for my hair (zero effect), but it does help with energy and stamina. (Alternative doc said not to take as some of the ingredients are related to breast cancer. However, I take less than the dose recommended on bottle.)
B-Complex
Megafood brand balanced B complex
I take as directed on the bottle. Part of my multi-vitamin alternative, and was recommended for hair.
Thyroid Energy
Take 2/bfast
I take it because every alternative doc I’ve been to tells me to go back on the dessicated thyroid and I don’t want to. So I take thyroid supporting pills. These are one of them. Part of getting well means treating your whole body, not just the CLL.
Primrose Oil
2600 divided between lunch and dinner
(for my hair…again)
Iron
(ferrous sulfate)
130mg each day
I’ve had a low ferriten count which is related both to my tendency to have a low RBC and also (you guessed it) to thinning hair. So I take these every day. They cause constipation. Yup. So I take the next pill to deal with it. Works like a charm. Note: ALWAYS TAKE IRON SEVERAL HOURS APART FROM MINERALS;this means with no dairy (calcium) and no other mineral-containing supplements. This can be a challenge, and until I learned it, I had a hard time getting my ferriten score up. (I take my iron at lunch with vitamin C and other, non-mineral supplements.)
Triphala
I take NOW brand, but others are probably fine.
1.5 pills/day.
.5 at bfast, 1 at dinner
(see above) When I was taking a smaller dose of iron, I took less triphala. You have to experiment and see what works. It can take a few days till your gut settles down to business. Be patient!
Vitamin C
1000mg at bfast lunch dinner (total 3000mg)
For all around good health, and also at lunch it helps to absorb the iron. (See Iron above.)
Energyzing Iron
by Enzymatic
I take two/day at lunch, along with my regular iron pills. Not sure if this one is working that well, but afraid to stop because my ferriten is finally climbing.
Iodine
12.5mg/breakfast
this is another thyroid support item
Methyl Folate
1000mcg @bfast
recommended by two alternative doctors for general CLL support (can’t remember why) : )
Colostrum
1 pill at bfast and dinner
This is supposed to boost immune system
Elderberry
575mg @ lunch
generally supports immune system
K2/MK7
1 pill
helps coagulate blood (good for low platelets)
generally recommended to balance your vit D intake
D’Mannose
as needed for UTIs (which thankfully I don’t get much any more)
I take these when I THINK I might get one, and never travel without it!!!!
Maitake D Fractions
These mushroom pills are well touted as being therapeutic for cancer. I did well without them, but added it to my list becuase it was so well recommended.
Baking Soda
about 1/8 teaspoon in a glass of water before bed
this keeps my urine alkaline, which is supposed to be helpful for general health and for cancers
this is a cheap one! Just buy the box of baking soda in the super market and use!
(I use it for cleaning as well, instead of Ajax or Comet.)
Grape Seed Extract
@ bfast and dinner
also good for general health
Zinc
1 pill, bfast and dinner
part of my multi-vitamin set
Betaine HCL
This another digestion booster. The HCL is for hydrochloric acid. Some bottles say to take AFTER meals. I take it with meals, or eventually I forget to take them. When I stopped for six months, my dental visit showed more plaque. So apparently it breaks down plaque and other ickies in our digestive system. Worth a try, I think.
Hemp Protein Powder
5X/week with my breakfast smoothie
take as directed on bottle,
I’m trying to avoid dairy, as it causes congestion.
So this about sums up my daily pills. There are others I take, as needed. Bromelain (pineapple extract) for pain and inflammation. NAC and ALC for my Menieres, as needed. There may be more, can’t think of them now. Please feel free to post any questions on this post and I promise to answer asap.
To your good health!
30 Responses to "Supplements for CLL"
May 9, 2019 at 1:39 am
Hi Denise,
Which brand of D’Mannose do you use and how many a day do you take and for how long?
Thanks!
May 10, 2019 at 9:49 am
Hi Gil,
I use D’Mannose brand, because it is the most available. I buy it on iherb.com. I generally take the powder form, mostly because I already take quite a few supplements, and this is a way to cut back on that. When I take the powder form for prevention, I stir one teaspoon in about 8 ounces water — two times a day. First morning and at dinner. When I feel like I might be fighting a bladder infection, I take as often as every three hours, and will even take an extra in the middle of the night. Previous research I’ve read indicated that you can’t overdose (although I wouldn’t do the frequency for more than a day or two). If I’m taking the pills, three pills is the same as one teaspoon — so same frequency as described above. BTW, the powder has a pleasant enough mild, slightly sweet taste.
All this said, I didn’t start with the D’mannose until I’d exhausted use of going to doctors and having urine tests for infection. If you’re in severe pain and the d’mannose isn’t giving relief within a day, go see a doctor. If you have a bleeding UTI (urinary tract infection with visible blood in urine) go to the doctor or emergency room! D’mannose is good for prevention and controlling infection before it starts. But make sure you know what you’re working with. Any more questions about this, please let me know.
All best, Denise
March 13, 2019 at 12:40 pm
Hi Denise. I have been taking vit D3 an K2 for about 6 months now at 4000 iu a day. I have recently started to experience nocturia in the night. I get up on average around 3 times. Could it be I am having too much vit D3? I have read it can be a sign of toxicity. Hope you are keeping well Denise.
Jennifer
March 15, 2019 at 1:08 pm
Hi Jennifer,
I don’t know that 4000 IU could be a toxic amount. I take 9000 IU daily with no problem. However, we are all different. I would discontinue for a week, see if the nocturia goes away. Then I would resume at a lower dose and see what happens. If you restart at, say, 2000 IU, with no problem, I would up it the following week or two to 3000 IU. If it’s a problem, take less. If not, experiment with going up to 4000 IU again to see if that’s the cause. I’ve had to do this with many supplements and foods to see what is bothering me — or what is working on improving my blood scores. Unfortunately, we are all different, so there is not one set answer. (If only!)
Give it a try and let me know how you’re doing. Losing sleep isn’t healthy either!
All best, Denise
March 15, 2019 at 1:29 pm
One more thing, Jennifer, experiment with the K2 as well. Even switch up brands and see what happens. Wait a week to see if you notice differences. Please check back in and let me know how it goes (or doesn’t) 🙂
March 16, 2019 at 8:58 am
Thank you for the information yet again Denise. I find it very difficult to know exactly what is happening in my body with this CLL. I did stop the D3 and K2 and found the nocturia to have gone from getting up 3 times in the night to just once in the night over the last two days. Early days yet though. I don’t have a very good GP here in the UK. She doesn’t understand what is going on in my body. You can feel so alone with this disorder. Thank God for you!
March 16, 2019 at 4:11 pm
Hi Jennifer,
I don’t have a particular doctor or practitioner that “gets” me either. It was a hard thing to get over, but the truth is you might get lucky and find someone like that. But in the end, we all have to be our own best advocates. No one else is going to pay as much attention to our bodies and our reactions to supplements, stress, etc., as much as we do. It’s a fact of life. It doesn’t mean the doctor is inept; sometimes, they just really don’t know. There is not an absolute answer to most of our issues (like whether the vitamin D3 or K2 is the culprit in your nocturia). They know about ordering up and interpreting tests (which IS very useful!), and ordering up meds, but the day-to-day questions we have to figure out on our own. Once you get past that, you’ll feel empowered. Yes, go to doctors, get advise. But also do your own research. And research means that if you find something interesting, research it even more. Read books. Listen to youtube talks. Everything!
In the meantime, I’m glad to be here for you. We all learn from each other!
Be strong… and be well! – Denise
February 27, 2019 at 1:46 am
Hi Denise,
I check in every once and a while to see how you’re doing. I’m still in stage 0 with no symptoms, but my wbc is up to about 32,000. This November (2019) will be two years since diagnosis. Just wondering what brands you use for these four supplements, Krill Oil, Nettle Leaf, Pau d’arco, and Grape Seed Extract?
Thanks,
G.
February 27, 2019 at 10:50 am
Hi G,
Thanks for checking in. Other than trying to impale myself with a shovel handle (and bruising my ribs) while shoveling snow two weeks ago, I’m fine. To answer your question, the brands i use are: Mercola Krill oil for women (obviously, take for men if that applies), Nature’s Way Nettle leaf, Nature’s Way Pau D’arco, and I change it up with the Grape Seed extract. I believe my latest is Healthy Origins. Here is a LINK to an article about how to look out for synthetics when shopping for vitamins. It’s all about knowing what to look for on the label.
About being stage zero: congratulations! That is wonderful! About the WBC creeping up, I would take action. The first action is to understand that you absolutely ARE in a good place. If the doctor isn’t sounding alarm bells, that’s great. On the other hand, the doc is willing to wait until you need conventional therapy, and it’s best to put that off as long as possible (indefinitely would be even better). Personally speaking, I would try to bring that WBC down. Here are the things I’ve done that do this. (Do I need a disclaimer here? I’m obviously NOT a doctor, and I’m just sharing my experience.) I would work on healing your gut. I’ve been learning that health begins and ends in our digestive tract. Make sure you’re taking a large dose of vitamin D3 (D2 is synthetic)(I take about 9000 IU daily, less in the summer), don’t eat anything burnt, ever. Stick to soups and stews and slow stir-fries. This means no potato chips (I cheated and had an avocado-oil chip last night, but that is extremely rare for me.) See about eating fermented foods and mama’s chicken soup (homemade…it’s really easy, bring the bone-in chicken to a boil with veggies, and simmer… voila!) These are all do-it-at-home things that can really effect your numbers. These are changes you can make that could possibly turn that WBC number back to a more comfortable level.
Thanks for writing — and wishing you the best of health! – Denise
June 4, 2018 at 2:30 pm
Hi,
Found your site and am grateful for all your excellent info.
Have you ever considered Essiac Tea? Neem leaf extract also?
Best, Chip
June 4, 2018 at 3:16 pm
Hi Chip,
It is my pleasure to share whatever information I have that can help other people. Of course, I report on my own experience, and in a way we all have to find our own way. If only there were a one-size-fits-all method for beating leukemia and cancer. But there are similarities, and I hope you’ve read some of my more recent pages with lists of lifestyle changes that can only help. (I know it all sounds small — like get sleep! — but when you put all the suggestion like this together, you can get traction on getting well.)
Okay, to your question. I have considered, but not taken Essiac Tea. I’ve heard good things about it, but not specifically about CLL. And yes, I’ve tried Neem leaf extract. It had no negative effect, but unfortunately, for me, had no effect at all. This does not mean that it wouldn’t work for you…or that it might work for me if I tried it again. I honestly don’t mean at all to be vague. What I’m getting at is that when you work on a combination of factors (diet, exercise, lifestyle), and you constantly make changes in the hopes of improving, it’s possible that your body will be more receptive to a supplement that didn’t work earlier, because your base constitution has now become healthier. I hope this makes sense.
So for this reason, I would try both Essiac and Neem. The good thing about alternatives is that they rarely hurt, or even have much of any side effects. But try just one at a time, and see if you feel differently, or better yet, if your blood work shows improvement. In my case the blood tests have been the major measure of health. Some with CLL have symptoms, and are eager to alleviate these symptoms, even though their numbers (WBC white blood count) is steady. So try and test, and try and test… and repeat.As long as you are alive and well, you’re on the right track.
Thank you for writing on the site, rather than via email. Your question can help other people who are searching for answers.
All best! Denise
March 27, 2018 at 6:49 pm
Hi Denise
I was diagnosed with Stage 0 CLL in 2013 at age 50, In 2016 when my numbers began to get troublesome I began to research alternative supplements in addition to what I had already been taken and increased my intake of natural supplements and antioxidents and increased my exercise routines. This small change allowed me to slow down the rise in my WBC and increase my Placates [platelets]. Last Nov check up was the first time my WBC actually went down and the placates rise was signifigant up over 200 for the first time in years. However I also had Oral surgery just prior to remove inflamation and infection in my gums, so I am not sure how much of an impact this had on my readings. You have listed so much information here. i was wondering if you could share what stage CLL and what type of number changes you saw when you introduced or increased the intake of the CLL supplements you mentioned. My March test saw another increase in my WBC and a slight decrease in my Placates again so I am looking to introduce additional natural treatments here.
March 28, 2018 at 11:22 am
Hi Michael,
Thanks for writing, and glad you’ve found that natural supplements work for you! About stages, I was diagnosed also at stage zero in 2001, when I was 46. I have no idea of the stage I’m in at this time because I rarely go to the hematologist, but do often test my CBC and other markers. I imagine I’m still at stage zero. I can tell you that Platelets (I’m pretty sure that’s what you’re talking about) are tricky. I’ve read that pau d’arco and papaya leaves are good for raising platelet count. I’ve had some success with eating organic free-range chicken skin and bone broth soup — both of which are full of collagen. So even having bone broth powder (organic!) would be a good idea. I used to take Great Lakes collagen in my morning smoothie. It’s a good product and would probably be helpful for you. The bone broth and chicken skin are delicious! Make sure to cook the chicken for a long time at low temperature. (I start at 325 degrees for one hour — with the chicken in a roasting pan, not quite covered by water, and seasoned — and then reduce to about 200 degrees for another hour or two.) This slow-roasted chicken is delicious and theraputic.
About specific numbers, I do know that Peak Immune by Daiwa (iherb.com or luckyvitamin.com, or others) definitely keeps my neutrophil count at a more normal range. (My percentage is too low, but the absolute number is normal.)
Unfortunately, there is not one pill or supplement, or even a group of supplements that does the whole thing. I have a page on this site that gives the list of what to do. It is comprehensive, but, at least for me, it works! Here is a link: http://www.cllalternatives.com/2017/11/cll-diagnosis-15-natural-things-to-do/
I certainly hope this helps! Please write again with any questions, or to let me know how you’re doing.
Wishing you good health and peace! – Denise
October 10, 2017 at 10:40 am
Hi Denise! I just stumbled across your sight and am very intrigued. I was diagnosed with CLL about 18 years ago when I was in my early 30s. I went through chemo and was in remission for 15 years before it returned. I went through chemo again and was only in remission 3 years. My doctor is now wanting me to take a new targeted B Cell therapy pill, Ibrutinib. I am really hesitant about putting more poison in my body. I am considering trying alternative treatments & a natural regimen instead. Would you mind sending me any & all information regarding your diet, food choices, & supplements you take specifically for CLL? I know you’ve done a great deal of research & trial and error. I feel a little bit guilty asking you to just pass along all the fruits of your hard labor. But, all the information is overwhelming and trying to weed through what might work best is getting the best of me. Knowing whatever you have done has worked so well for you is very encouraging. It’s exciting to know how well you’re doing! I am very grateful for any information you can send me. Thank you so much!
October 10, 2017 at 11:21 am
Hi Lisa,
There is so much to tell you! First, I’m sorry you’re going through this. I know the bleak and black feeling of getting the bad news. But I’m glad that you’re looking for alternatives. But first, I do want to tell you that I’ve heard good things about ibrutinib. It’s not a chemo, and it has done well for a lot of people. I would research this first and make sure you’re not turning down something that might work for you.
However. Even if you do choose to take the conventional drug, I believe with all my heart and being that also doing everything you can to be well with diet and lifestyle will serve you well in conjunction with what the medical doctors can offer. I am currently writing an article/post to go on the site that tells “what to do when diagnosed”. This could also apply to you. Maybe it should be, “What to do when you decide to treat your CLL as a DIY project!” I will finish this article soon and post it. Here are some simple steps. In fact, they sound so simple that it doesn’t seem to be something that would fight leukemia or cancer. But it does!The problem is that it’s not a short-time deal (do this for 3 months and you’re cured). Instead it’s a lifestyle change and a choice. You have to be willing to make these changes indefinitely. I know that sounds daunting, but oh my, is it ever worth it!!!
Here is a list:
1. purify your water (get a good quality water filter for your drinking water and for your shower)
2. purify your air. This means keep all toxic items out of your home — including pesticides, laundry detergents that aren’t “natural” or home made, personal care products — makeup, shampoo, etc; cleaning supplies for kitchen and bath; don’t spread toxins in the form of synthetic fertilizers and (God-forbid) herbicides and pesticides on your lawn. The purpose here is to keep the toxins away from your body. When your body is fighting the toxins (having to get rid of them, daily) it takes up the energy and ability to fight off your CLL. This might sound simplistic, but it is true. Stay away from anything that can cause CLL, like high EMFs in your home.
3. Get 8 hours of sleep each night (on your 100% cotton, preferably organic sheets washed in vinegar and a half amount of “natural” detergent.
4. Exercise 5 – 7X /week. Gentle exercise like a brisk walk, rebounding, eliptical, weights, etc.
5. Set up your life to reduce your stress. If your job is making you crazy, it’s not good for your health. Make changes, if you have to, in order to support your health.
6. Check your vit D level (we’re all low). I take 8000 – 10,000 UI a day of vitamin D3. YOur vit D3 level should be between 70 and 100. If it’s in the teens (like mine was when first tested) that’s an indicator that your body is not able to fight cancer/leukemia.
7. Check out the rest of the supplements on this post. Those important to me include vitamin C at 3000/day; Peak Immune by Daiwa 4 pills/day; maitake mushrooms or reishi mushrooms, either dried or powdered, in my smoothie or soups or stir fries; Vit B-17 (laetrile) which can be bought as bitter almonds in your health food store or as a pill. I go to TJsuppy.com.
8. Eat a plant-based diet. (This is NOT vegetarian.) Buy organic as much as possible. Eat 80% veggies to 20% fruit, and have animal protein daily at one or two meals. Wild caught fish or organic, free range chicken or turkey, grass fed and finished organic beef. The quantity of animal protein is the classic “deck of card” size at one or two meals/day.
9. Slow cook your food. NEVER eat burnt foods! My WBC dropped dramatically when I started this practice. Learn to slow-roast, slow stir-fry, soups, stews. There are techniques. Check out youtube. (I’m not the only one who does this.) : )
10. Drink only filtered water and herbal tea. Most do well with green tea. Buy organic. (I personnaly don’t drink green tea. I am very caffeine-sensitive.)
11. Find a good local alternative doctor. Go to ACAM.org to start your search. If you have to go to the time and expense of trying out a few till you find a fit, it is worth it. It is good to have a like-minded doctor on your side.
There is so much more, but II’m pressed for time. This is a good start. I am HAPPY to help! This is why I have a web site!! If you haven’t seen this post, there might be more information here: http://www.cllalternatives.com/2017/09/cll-curable-manageable/
Also, please read Nasha Winter’s book, The Metabolic Approach to Cancer
https://www.amazon.com/s/?ie=UTF8&keywords=metabolic+approach+to+cancer&tag=googhydr-20&index=aps&hvadid=190501323518&hvpos=1t1&hvnetw=g&hvrand=18189800065074774613&hvpone=&hvptwo=&hvqmt=e&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9016823&hvtargid=aud-346396122458:kwd-493409248752&ref=pd_sl_6i2gnkbhsc_e
and Tripping Over the Truth
https://www.amazon.com/Tripping-over-Truth-Overturning-Entrenched-ebook/dp/B01N25FPY9/ref=sr_1_1?ie=UTF8&qid=1507648826&sr=8-1&keywords=tripping+over+the+truth+by+travis+christofferson
After reading Winter’s book, I realized I’m already doing about 90% of what she recommends. It was validating. (Although being well is the BEST validation.) In her book she talks about doing both conventional AND alternative. If you’re only going to buy one, get her book!
Please write back with any questions. Glad to answer any time.
All best, Denise
July 12, 2017 at 9:29 am
You Are Welcome Denise,
Please take a close look at page 27 (printed on the page)
There are 2 similar formulas. Epigallocatechin gallate (EGCG), on the left, and the flavopiridol on the right.
Epigallocatechin gallate, it is found in high content in the dried leaves of green tea (7380 mg per 100 g) and, in smaller quantities, black tea.
https://en.wikipedia.org/wiki/Epigallocatechin_gallate.
Mayo Clinic made a clinical Trial, EGCG Clinical Trial Results.
http://updates.clltopics.org/1164-green-tea.
The Clinical trial isn’t continued because the pharmaceutical industry collected the information, and created a similar, man made product named Flavopiridol HCl, on which can put a Patent and make a profit.
Flavopiridol HCl
http://www.selleckchem.com/products/flavopiridol-hydrochloride.html
I bring this in your intention because David cured hic CLL with Green Tea extract, and some other things.
Cll is a clinically, genetically, molecularly very heterogeneous medical condition, where 2 patients are note the same depending on the number and places where DNA mutations happens, and other factors. Keep in mind that cll transforms in more aggressive and deadly conditions.
http://www.cancernetwork.com/articles/chronic-lymphocytic-leukemia-and-associated-disorders
Controlling CLL is a great factor, but curing it is worth to try and David did it.
July 12, 2017 at 12:55 pm
Hi Mark,
Thanks for writing again! I know about the EGCG study. I followed it when it was new and people were posting about it in real time. I was excited and, of course, I tried taking green tea pills. Unfortunately, for whatever reason, I responded poorly to the pills. Whether I took regular or decaffeinated pills, I had heart palpitations, especially when resting and trying to sleep at night. With great sadness I discontinued my personal test of green tea pills.
I absolutely agree that we are all different, and will respond to different modalities, whether conventional or self-administered herbals or other. This is why chemo will kill some and save others, at least for a while. Also, the conventional folks have introduced promising products, like ibrutinib, that are saving people, or at least prolonging life.I truly appreciate their efforts, even if it is my goal to avoid all that for as long as possible.
What I don’t agree with is that “all” cll transforms to a more aggressive or deadly form. I looked at that chart you have in the cancernetwork link above. I’ve had both anemia and thrombocytopenia (low platelets), meaning that I’ve had a median two-year survival rate. That was at least 10 years ago, and I’ve managed, through DIY efforts, to reverse both those diagnoses, so I guess I’m back at stage zero. We have more control than you think.
The anemia required higher doses of iron, taken WITHOUT any dairy or calcium or any other minerals (magnesium comes to mind). When I increased my iron and ferritin (iron storage) scores, my hemoglobin returned to normal and stays there. (I continue to take the iron, and test regularly.) The platelets were trickier. I make bone broth soup and eat/drink 4 to 8 ounces daily. Also add Great Lakes powdered gelatin to my morning smoothie. My platelet levels bounce around, but generally are safely over 100. They’ve been as low as 58 in the past. Very concerning.
I don’t write this to be arrogant — although I will admit to having a bit of a chip on my shoulder to the medical establishment that gives me a timeline to death, with the assumption that only their toxic brews can help. It hasn’t been true. I may not be “cured,” but my numbers are similar to what they were when diagnosed in 2001. I live a fully normal, functioning life. I’ve lived to see my sons marry and have children. (Being a gramma is quite the kick!). So I don’t take the death rates and timelines seriously, and it makes me angry that people read and are frightened by them. I know I certainly was frightened back during the first 4 years of diagnosis.
Yes, I would really like a cure. However, I would never return to my former lifestyle and diet. I will always eat bone broth soup, take my B-17, high doses of vit D3, 3000mg of Vit C, eat shitake mushrooms several times a week, and never, NEVER eat burnt or overcooked foods. Even if I were totally given a clean bill of health, I would do all this and more, including getting enough sleep at night and not stressing myself, because…once we’ve been a host to cancer, we have to accept that our body might be a host, once again, if we’re not vigilant.
Please feel free to respond, and let me know what you think.
All best, Denise
July 5, 2017 at 3:19 pm
Maintenance Therapy for B-Chronic Lymphocytic Leukemia
http://www.hematologyandoncology.net/files/2013/07/ho0111_obrien1.pdf
Good information Re: Drug Candidates for Maintenance Therapy in CLL
And very important info regarding:
Naturally Occurring Compounds as Candidates for Maintenance Therapy.
July 11, 2017 at 11:07 am
Thanks, Mark. Interesting article. I particularly like page 26 (as printed on the page), or page 7 of 10 of the electronic document. It has the chart that explains how natural foods (broccoli, shitake, etc.) work to maintain good health. It’s working for me!
May 18, 2017 at 2:28 pm
Two cautions should be kept in mind when using amygdalin. First, it is necessary for patients using amygdalin to have a sufficient source of sulfur in the diet so that any excessive cyanide formed near normal cells can be converted to thiocyanate by the addition of sulfur. A relatively inexpensive supplement source is methyl sulfonyl methane (MSM). Secondly, because thiocyanate tends to be suppressive to the thyroid gland, it is essential to have sufficient iodine to overcome any suppression of the thyroid gland by thiocyanate.
March 21, 2017 at 8:32 am
Denise, Thank you for sharing. If it’s possible, could you please specify brands for Nettle, Pau d’Arco, Selenium and Magnesium.
March 21, 2017 at 10:44 am
Hi, You are very welcome, and glad it’s helpful! To answer your question:
Nettle and Pau D’Arco are both Nature’s Way brand.
Selenium is NOW brand.
Magnesium Citrate is Solaray. (harder to find, but it’s out there)
Hope this helps.
Be well, Denise
March 22, 2017 at 12:48 pm
Denise, Thank you very much for the prompt reply and your blog – it always give the hope.
Best wishes, Ivone
March 29, 2017 at 3:46 pm
Hi Denise, One more request concerning brands. What are your sources of D3, Curcumin, Vit E succinate, Amino Acid Complex, vitamin C, Methyl Folate, Maitake D Fractions and Betaine HCL.
What is your opinion on DMSO and 3% H2O2 food grade?
Thank you, Ivone
June 4, 2018 at 9:27 pm
Hi Ivone, I never answered, and my apologies. D3 is NOW or Healthy Origins. I no longer take Curcumin (but still recommend it for those who don’t have a problem with it!) by Life Extension. Vit # succinate by Nutricology, Amino Acid Complex by Bluebonnet, Methyl Folate by Life Extension, Maitake D Fractions by Mushroom Wisdom , or better yet, buy mushroom powder by OM (and try more than Maitake!), Betain HCL by NOW. I haven’t taken DMS, but have heard good things about it. Also good things about H202 (peroxide), but don’t take. I DO take baking soda 1X/day at night before bed.
Please post any more questions!!!’
Be well! – Denise
February 11, 2017 at 5:35 pm
Thanks so much for this comprehensive list. It certainly helps someone who is new to this world. It’s encouraging to see you have done well and have found the herbal supplements helpful. I wish you continued health and happiness 🙂
March 6, 2017 at 11:32 am
Best wishes to you as well. We can all work toward a complete recovery — while enjoying life on this journey!
June 11, 2020 at 5:32 am
Hi,
Very interesting list of supplements you are taking. I’m certainly going to try the Biosil as my hair is a mess with this CLL.
I wondered if you had tried beetroot and carrot juice. My herbalist put me on to it. When I take it my day and night sweats stop so obviously doing something.
The other thing I take but not on your list is Matcha green tea capsules 2x1360mg daily. You do loose weight on them so you need to keep an eye on that. I believe they hold ny CLL in check.
June 12, 2020 at 2:54 pm
Hi, and thanks for sharing. FYI, my use of supplements change over time. I did stop taking biosil, and have instead been taking a product called HairLavie. I know it sounds extra commercial (and it is), but I checked it out and the ingredients duplicated a lot of what I was already taking and also had a good quality saw palmetto. So I’ve been taking this product for 1 full bottle and I’m probably a third into the second. Will make my final determination when i’ve completed three bottles. So far, my hair seems to behave better, and less is falling out. I don’t see new growth at the scalp and that is my gold standard. I’m also restarting (for both general health and for my hair) Ancestral Supplement’s bone marrow pills. I was doing great on these pills at full dosage, both in hair and in health, but i discontinued because I was having other problems, as the bone marrow is high in oxalates, and I have problems with that. (Yes, we are all chemistry experiments, sorry to say.)
Which brings me to your other questions. I cannot tolerate beetroot because, once again, it is high in oxalates. For a quick bit of information…oxalates are a spiky substance that is found at the molecular level in many vegetables, and in varying quantity. They are best known for causing kidney stones (and that is most of the information you’ll find about this online). However, they can also cause bladder pain and microscopic bleeding (my problem) and other mysterious pain conditions in soft tissue. So people like me, and there are many of us, have to avoid overuse of very healthy vegetables, like beets, rhubarb, Swiss chard, other dark greens, almonds and other nuts, and so on. There are many lists.
So, yes, beetroot is very helpful for building the blood, but I am unable to take part in this. I’m delighted to hear that it helped with your nightsweats. I do eat a lot of carrots every day, but so far no carrot juice.
About green tea capsules, I’ve read wonderful things about this for CLL in particular. I’ve read testimony of people who’ve improved to the point of feeling cured. So I think it’s a wonderful thing to take for CLL. However, once again, in my case it created problems. I’ve tried taking green tea pills twice, Life Extension brand. It caused palpitations. I tried it again with decaffeinated green tea pills, and the same thing happened. I discontinued and tried again a few month later, in case the palpitations were from another cause. Unfortunately, it happened again. Very frustrating, to say the least. That said, I think it’s a great supplement to take, with caution, of course.
With ALL supplementation, it’s a good idea to start slow and build up dosage over a week or two, with every supplement. One at a time. If you have a reaction, you need to know what’s causing it. On the same token, if you start improving, either with symptoms or with blood test results, it’s nice to know the cause of that, too.
Again, thank for writing. Please check in now and then and write again, and let us know how you’re doing.
All best, Denise