CLL Alternatives

Supplements for CLL

Posted by: Denise on: January 25, 2017

CLL supplements

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!

 

11 Responses to "Supplements for CLL"

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 🙂

Best wishes to you as well. We can all work toward a complete recovery — while enjoying life on this journey!

Denise, Thank you for sharing. If it’s possible, could you please specify brands for Nettle, Pau d’Arco, Selenium and Magnesium.

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

Denise, Thank you very much for the prompt reply and your blog – it always give the hope.
Best wishes, Ivone

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

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.

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.

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!

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.

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

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