Posted by: Denise on: January 25, 2017
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!
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.)
(a form of Co-Q10)
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.)
667mg @ breakfast
this is the Omega 3 oil that everyone should take. Many people take fish oil. I prefer the krill. No fishy smell.
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.
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.
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
(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.)
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.
500mg divided between bfast and dinner
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.
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.
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.
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.
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.
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.
1000mg divided @brast/dinner/bedtime
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.)
Megafood brand balanced B complex
I take as directed on the bottle. Part of my multi-vitamin alternative, and was recommended for hair.
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.
2600 divided between lunch and dinner
(for my hair…again)
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.)
I take NOW brand, but others are probably fine.
.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!
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.)
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.
this is another thyroid support item
recommended by two alternative doctors for general CLL support (can’t remember why) : )
1 pill at bfast and dinner
This is supposed to boost immune system
575mg @ lunch
generally supports immune system
helps coagulate blood (good for low platelets)
generally recommended to balance your vit D intake
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.
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
1 pill, bfast and dinner
part of my multi-vitamin set
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!
Posted by: Denise on: May 4, 2016
I’ve been asked by a few of my CLL buddies to share some of the recipes I use in my daily life—in my quest for optimal health. One of the items I make at least each week, and eat nearly every single day are Carob-Coconut Bars. Coconut oil is a natural for anyone trying to improve their immune system. It fights nearly all pathogens (germs), including viruses, bacteria, and protozoa. There is documentation on youtube.com about its ability to improve Alzheimer disease, and perhaps prevent it.
The problem is that coconut oil is kind of tough to eat on its own. Personally, I’m not that fond of the coconut taste. But the good news is that the taste of carob is a bit stronger than the coconut flavor, and carob has its own natural sweetness, so no need to add any natural sweetener to make it palatable. (I first tried making this with powdered chocolate, and found it was awful without sweetener.)
The ingredients are:
Coconut Oil (I buy organic from Costco)
Carob Powder (I buy from my local health food store)
Olive Oil (organic, cold-pressed from Trader Joe’s)
Pour a tablespoon or so of the organic olive oil into a lasagna pan. This is so that the carob bars will be easier to remove from the pan when done. I wasn’t specific about the quantity of each of the ingredients. This is because all you need to do is use equal amounts of coconut oil and carob powder. I buy carob in plastic containers at one of our local health-food markets. I wash them when empty and use them to measure the amount of coconut oil to use the next time. So, think 2 cups coconut oil to 2 cups carob powder. Simple!!!
A tricky thing, though, is that coconut oil is a solid, unless it’s hot out and you don’t use air conditioning. 🙂 Because of this, you need to measure out the amount of coconut oil you need for your batch (figure 2 cups), and heat it on a low flame in a saucepan. It will melt quickly.
When the mixture is totally blended, pour into your greased lasagna pan.
Put into the refrigerator to cool. (Its’ right in front of the milk.) (Notice all the veggies and fruit in my refrigerator.)
After at least an hour, remove from refrigerator and let return to closer to room temperature before cutting into squares.
I prefer to eat my carob bars cold, directly from the refrigerator. When I take them to work, I pack a freezer pack with it. It doesn’t taste as good warm…and the coconut oil gets mushy at room temperature. That said, I’ve had regular civilians (company who are NOT into natural health!) enjoy these bars when served cold along with walnuts or almonds.
You could make them with chopped nuts inside. You could eat them frozen. (But be careful, I nearly chipped a tooth trying that; hubby has stronger teeth–no problem for him.)
Conclusion: These are a tasty, delicious dessert for those who have been dessert deprived (like me). I love them!!! I eat six to eight 1-inch bars each day. (They are about a quarter-inch thick. Sorry, I don’t know metrics, so please convert if you’re not from the US.) If you decide to give this a try, let me know what you think.
Wishing you healthy thoughts and life! – Denise
Posted by: Denise on: February 19, 2016
I’ve been so busy with my life lately, that I’ve neglected posting here on my CLL web site. The good news is that I’m doing well! My numbers have been improving. I’m stable, and therefore have been able to concentrate on other things in my life: like my work and my grandkids. (Jared, pictured at left, is our fourth grandchild. When diagnosed in 2001, I didn’t know that I’d be blessed to live long enough to see our sons marry and have children.) However, sharing my CLL experience is so important to me. I’m doing well and it’s not by accident. It’s not “spontaneous,” even though that is how a conventional doctor might describe my condition. It might not be “spontaneous remission,” but instead “spontaneous improvement.”
There is so much I’ve done, and so many changes I’ve made, that it will take many, many posts to share everything there is that you can do to try and improve your health. I believe that a lot of what I’m doing would benefit anyone with any kind of cancer—not just blood cancers, and certainly not just CLL.
Unfortunately, there is no one-size-fits-all breakthrough. Not in the conventional medical world. And not in the alternative world. However, (this is a BIG however), the alternatives don’t hurt you. They may be more difficult and require more effort and commitment, but they will cause no harm.
Here is a quick laundry list of my changes:
1. I never eat burnt food or any food cooked at too high a temperature.
2. I stick mainly to organic food, whenever possible.
3. I eat out once or twice a week, tops. This means I take my lunch to work. (I don’t consider this a hardship anymore, but a pleasure.)
3. I ferment my own vegetables, and eat them at each meal, at least a little bit.
4. I drink filtered water and organic herbal tea (specifically raspberry leaf tea, as it doesn’t leach iron and I tend to be anemic).
5. I have a whole orange about 5X/week in my smoothie. By “whole,” I mean the peel and the pith (the white part). The pith contains d-limonene, which is anti-leukemic.
6. I drink a cup of home-made bone-broth soup nearly every day. Several sources have recommended bone broth for leukemia and other blood cancers and disorders.
7. I exercise 5X/week for 15 minutes. On an elliptical, a rebounder (trampoline) and with weights. I’m not an athlete, but still pretty fit for a 60-year old.
8. I get sleep at night!!! It feels wonderful. I shoot for going to bed at 10, and get into bed by 1030 or 11 each night. Since taking a new pill (for my hair, prescribed by an alternative doctor), I’ve been sleeping like a baby. Okay, I’ll amend that: I sleep like a baby without colic. : )
There is probably more, but I’m writing at the top of my head right now. Each of these eight items could be it’s own blog post. And I’ve been asked by my CLL-buddies who write to me to please post some recipes. And I will. I promise. It all takes time and I’m delighted to say that I have a busy (and pretty healthy!) life. But this matters to me. YOU matter to me. So I promise I will get on with it and keep posting.
If you’d like to be one of my CLL-buddies, please write me at cllalternatives @ gmail.com (with no spaces — those are for the mail-bots). And please feel free to post on this article and on this site, because the more we share, the more we help even more of us struggling with CLL.
Posted by: Denise on: November 20, 2015
This is a guest post by Eric Clark, a Canadian who was diagnosed in 2012.
CLL Came to Visit
Although I am not a shy person, I have been reluctant to post any good news on the two CLL Facebook groups because they only talk about the medical aspects around late stage treatment. The guy who started the one in Canada warned me not to be fooled by any stories about green tea and the like.
The ‘anomaly’ showed up in routine blood work in August, 2012. My GP is friendly but not very helpful. When I met the specialist that Fall – this hematologist is young, female, overweight – I found her much more open to discuss health – but I only see her once a year. (She has since lost weight and clearly cares about her health). She did accept my suggestion of blood work every quarter since I want to monitor this more closely to assess the effects of my own efforts. The official stance of ‘watch and wait’ for early stage Chronic Lymphocytic Leukaemia tries to have you ignore the threat and come back in a few years when there is something to medicate. I have been proactive about my health for many years so I can detach from this attitude and get on with improving life.
For the first year – summer to summer – I took stock of my life and expressed gratitude more often for all the good things I enjoy in life. I began to tighten up a number of routines and clean up some issues that needed attention. My wonderful wife, Lia, really rose to the challenge. We shared more guided meditations, personal treatments and she prepared the best healthy food for me. I love our home in the country where we have real darkness at night as nature intended, true quiet broken only by the sounds of birds, animals and insects, as well as fresh air and water. I have failed to identify with this diagnosis but accepted the challenge to rise to a higher level of health.
In the second year, I focused on getting toxic people out of my life. This was a tougher realization than expected because I had attracted them or engaged them. It was all about me. They are mostly unaware of, or indifferent to, this change.
In the third year, I added an intense focus on supplements to give my body the best chance to improve its defenses and support more exercise. At this point, I had still not met another person with the same diagnosis except the online crowd discussing research, variations of chemo for later stages of CLL and the inevitable nasty side effects. I have avoided bringing my story or ideas for health to those Facebook groups. (More to come in a following post.)
Eric Clark – Oct. 2015 – email@example.com
Posted by: Denise on: November 5, 2015
Here is a second post on going wheat-free (and more) by fellow CLL-er, Eric Clark.
My First Quarter experience with a Wheat-Less lifestyle
In mid-June of this year, 2015, I decided it was time to read Wheat Belly and asked to borrow it from my good friend, John. I convinced myself that buying the book was too much pressure that might actually influence me to make some changes. Aren’t these mind games funny!? While reading the first chapter of Dr. William Davis’ first book, I got very engaged and decided he knew what he was writing about. I liked the fact that he is a cardiologist, not just a frustrated GP who decided to write a book with general health guidelines. This a hard-hitting indictment of medicine, public health, and various disease-centered organizations as well as the food and drug industries. It highlights solid research that has been ignored or buried deliberately.
Weight loss was not my focus but rather the many other possible benefits with respect to the chronic conditions that are too often described as the inevitable outcomes of the aging process. I began to journal various things that I noticed including the following:
In the first two weeks:
Second two weeks
Second month – mid-July to mid-August
My experience to date has cost me no money at all, perhaps it has even saved some.
I don’t feel like there is any reason to stop and revert to any former choices. I am still reading the second book – Wheat Belly – Total Health – and have the companion cookbook too. Lia is so good at this that we have not used any of those recipes yet. Most people are looking for substitutes for familiar, comfort foods like replacing cereal, toast, desserts, etc. so it can be helpful, especially to share with other family members who are not as committed to this way of eating. I have not had any restrictions in the quantity of the many lovely foods available – my body seems to know when it is satisfied.
The larger message is not just about wheat but rather about grains in general and how undigestible they really are; hence they lend themselves to more processing than other foods. I chose to give up wheat, rye and barley at first. Then I quickly added corn and oats to the list based on understanding more of what is really going on in my body. Remember to focus on your own motivations and enjoy your own benefits which might be quite a different list than mine. My longer term goals are to prevent bone loss and dementia which are hard to tackle if you start too late. I have watched in my family how these two conditions completely change a person’s lifestyle and former enjoyment in doing so many things in their later years.
Congratulations for considering this approach to improved health and for sharing my adventure.
Yours in health.
Eric Clark – firstname.lastname@example.org
Posted by: Denise on: October 28, 2015
Wheat-Less Wisdom – #1
As Humans – Homo Sapiens – we have evolved uniquely over the past 2.5 million years distinguished initially by our use of fire to cook meat. For most of that time we moved around, on foot, looking for and chasing our food. We did not eat three meals a day and often had very little food for a few days at a time. Our ‘snacks’ were berries, nuts and wild vegetables(tubers) while hunting for fresh meat. Eating the seeds of grasses – what we call grains – was a desperate measure in times when starvation threatened. We have only done this for 10,000 years, just 0.4% of our recent evolution!
Eating is an expression of individual survival. Sharing meals is a culturally-rich activity. Food is an emotional topic. Our choices are rarely based on true health science. When one decides to return to wheat-free living, it can be a very lonely choice. Institutions in key areas such as medicine, public health, education and the media do not support this choice. In fact, they seem to argue against it. And the many organizations that have formed around various major diseases have all determined that ‘healthy whole grains’ represent an essential component of healthy living.
During the past 50 years grain consumption has increased, as have a long list of degenerative conditions. The science that has demonstrated the direct link between the two has not been featured in a way that would seriously challenge this mass consumption of a food source that is more suited to 4-footed grazers with very different digestive systems. A study of various indigenous peoples around the world reinforces what science has discovered and yet we rarely learn from humans who are considered less ‘advanced’ than ourselves. Although we can boast to be living longer than even our recent ancestors, our quality of life may be severely compromised by several conditions that are described as ‘normal aging’. There is no easy justification for conditions that are occurring earlier in life such as obesity and diabetes.
Our so-called health care is really a disease management system which too many have come to rely on as their quality of life declines. The focus is on finding ‘a cure’ rather than addressing the contributing factors that are within our control. To some, the idea that our basic diet may be the culprit is just too simple to be the answer to these complex conditions. We have handed over our power in other ways so how could we know better than the brightest minds in medicine and food science? Is this just an excuse for not trying something as simple as a dietary change for a few weeks? As that famous line from Pogo says, “ We have seen the enemy, and the enemy is us! ” Eric Clark – email@example.com
Posted by: Denise on: August 15, 2015
I’m really big into lists. But sometimes I think it’s best to focus on one good thing at a time. And one good thing you can do for yourself is to alkalize. There is a lot of information out there about what to eat in order to keep your body alkaline and therefore more healthy. Livestrong has an article on just this topic.
Ironically, some of the acidic food we eat or drink can make us more alkaline. For example, vinegar is acidic, but is recommended for maintaining alkalinity. This can be confusing, but don’t let it get in the way of working towards alkalinity. In general, if you eat mostly vegetables, either raw or lightly cooked, along with your animal and vegetable proteins, you are encouraging your body to be alkaline.
To test your body for alkalinity, purchase some test strips either from your local health food store or online. Do a quick search and you will find them. We’re supposed to keep our body somewhere at 7 for optimal health. It’s recommended to test your morning urine for an accurate count. Follow the directions on the package. You can either dip the strip into a cup or your urine, or place the strip in your urine stream. Either way, quickly compare the color of the strip to the chart that comes on the package to get your reading. Do this for several days to get an accurate picture of your alkalinity.
Even with a healthy diet, you might find you need a boost to maintain alkalinity. What I’ve found very helpful it to take about a quarter teaspoon of plain old generic, bought-in-the grocery-store baking soda in a glass of filtered water. I take this just before bed with my enzymes, and once again first in the morning. Be sure to measure your first morning urine to see if this is working for you. Over time, you might not need to measure this all the time. But it’s good to check it once and again to make certain you’re maintaining your alkalinity.
Is this what is keeping me well? I believe it is one of the many things I do that maintains my good health. It’s easy, it’s unbelievably cheap, and as far as I know it can do no harm. An added side benefit for women above a certain age… no more pesky nighttime hot flashes. That’s worth taking it all on it’s own!
To your good health and alkalinity!!!
Posted by: Denise on: June 11, 2015
Living Well with CLL — June 2015 Update
It’s been just about fourteen years since I was first diagnosed with CLL, and I thought it was time I made an update. It’s always my goal to post more frequently. I worry that people who go to this site will get a flash of fear if I haven’t posted in months (or even in a year!). I know I used to worry that other CLL-ers might have become too ill to post — or worse. So I always resolve to post more frequently. One resolution I have made good on is that it’s now possible to make posts in the comments section of this site rather that to be available only via email. This is huge! The more we can communicate on this site, the more people can benefit from the information we put out here.
I would like to say that as much as I’ve started this site to help others, it has been helpful for me, too. So a big THANK YOU to all the people who have become my email buddies! We are all proving that CLL does not have to be a death sentence. We can survive with — and without — conventional treatment, depending on our needs and particular situation. Whether we choose to go conventional or not, all the good things we do for our health will help us stay well and prevail!
Now I feel like I’m writing a State of the Union address. But what I really want to do is give an update of my health. I’m doing very well! My last blood test was better than it had been in eight years! Perhaps I will soon post my personal Xcel sheet, showing my blood test results from June 2001 to the present. Now here comes the question: what have I been doing to be well and stay well (and even get a little better)?
I wish I could give you a magic-bullet answer. But the answer is simple and also complex. (sorry) If you look through this web site/blog you will see a lot of the things I’m doing and have done. But there are some basics and I will share them with you.
1. Get eight hours of sleep each night. We heal while sleeping, so why not get the most benefit out of this. You can go to mercola.com and look up suggestions to make this happen. What I personally do is eat a light dinner (most of the time), make certain your bedroom is super dark (room darkening blinds or drapes), take your magnesium before bed. Wind down and keep electronics out of your bedroom. (I do read my Kindle each night, but no TV.) I love this! It’s very luxurious to get enough sleep each night. I go to bed with the expectation of at least a half hour to read. After that I sleep well. Also, I try not to drink too much after dinner to avoid trips to the bathroom.
2. Reduce stress. Yes, life is worth living with less stress. Maybe even worth more than a high-stress life. Make subtle changes in your work life and in your personal life to accommodate this. Be kind to yourself. Imagine that you’re helping someone else, if that’s what it take to allow yourself to say ‘no’ to others’ demands. (This doesn’t mean you have to become self-centered; just that you don’t over-extend yourself to the point of making your life difficult.)
3. Eat food as close as possible to the way God made it. This means eating a lot of fresh, organic vegetables, either raw or lightly cooked — or better yet fermented. Learn how to ferment your own food. It’s easy once you get the hang of it. I can perhaps make some posts about how to do this. But honestly, youtube.com is loaded with videos of more talented people sharing their cooking and fermenting tips. I also eat organic beef, chicken, turkey, wild-caught salmon, some dairy (not much, still have some lactose intolerance), organic nuts and seeds (pre-soaked) and occasional bean and rice dishes. I soak all grains and legumes for several hours before draining, rinsing and cooking. This releases the phytic acids that protect the grains/beans from spoiling, but also make these foods hard to digest.
I’ve recently started to drink GT brand kombucha, which is a fermented tea — and it’s delicious! And also chock full of probiotics and a great way to detox. I’ve taken a class through my local Weston Price Foundation in how to make this drink at home. Can post about that as well, eventually. The point is to take in as many natural probiotics in the fermented foods and drinks. This is much more effective that taking the probiotic pill. (Not that I’m against pills; I take a boatload daily.)
4. Never eat burnt or even browned foods. I know this is hard to deal with to start, but honestly I’ve learned how to make delicious foods even with slow-cooking only. I make soups and stews. When I roast chicken, I season and then add a lot of water to the roasting pan (about half-way up the raw chicken), and then cover the top of the pan with foil or the lid, and cook at 350 degrees for the usual amount of time (an hour to 1.5 hours), keeping an eye on the chicken to make certain it doesn’t get close to burning. The chicken comes out tasting great! Fall off the bone delicious. I cook enough for leftovers, so that I’m not cooking all the time. On nights when I don’t have time to cook (or haven’t planned ahead) I slow-fry farmer’s market eggs in grass-fed butter on my cast-iron skillet. I simmer all the way through, carefully turning over when the eggs are just done enough to turn. No brown–front or back — and delicious. You can also boil or poach your eggs, as this is easier! (just love those fried eggs) 🙂
5. I’m gluten free all the time. I’ve been doing this for so long it’s not a challenge. I just about never eat bread,but do keep gluten free bread in the freezer for emergencies. I’ve found that if I eat even the gluten free bread twice in one day I get mouth sores! This is a message from my body to stay away from processed foods!!! I will make that it’s own number:
6. Do NOT eat processed foods! It’s poison, even the organic so-called healthy stuff (see GF bread above). It’s okay on a rare occasion, particularly when you’re with other people. but try to avoid this on a regular basis.
7. Exercise regularly. Your body was meant to move. Exercise as much as you can and as often as you can. I’ve never been athletic, but even I can exercise. I rebound, sprint on the elliptical, and lift weights at least three times a week. Rebounding is bouncing on a mini-trampoline. This is great for CLL as it moves the fluid through your lymph system. If we’re sedentary, the lymph doesn’t drain, which is not good. So bounce several minutes a day at least. Gentle bouncing works as well as high bouncing (and doesn’t jar your body so much). Sprinting means I go as fast as I can 30 seconds out of every two minutes I’m on the elliptical. I don’t recommend the treadmill. It’s more boring (to me) and too many people have been injured on it. I’m thinking of a co-worker, Sonia, Harry Reid, and also the Facebook COO’s husband. No point in taking good care of yourself and then risking your life while exercising, no?
8. Choose your supplements wisely. I probably take too many. Supplements are like advertising. You take a lot of them and they work; but you’re not sure which ones are working! Here are two of my favorites: (not going to include my entire list, as some of them are to preserve my hair as I’m one of the 1/3 of women who experience hair thinning with age; also take a lot for natural thyroid care and heart health. Not all my issues are CLL-related).
A. Peak Immune (by Daiwa) ~ has been a life saver, possibly literally, in keeping my neutrophils at an acceptable level. I’ve actually inadvertently done a double-blind on myself with this pill. When I take it, my levels are good. When I stop, after a few weeks or months, down they go. If your neutrophil level is fine, don’t bother with this pill as it is expensive.
B. Vitamin D3 ~In recent years, this vitamin has been shown to be a potent anti-cancer product. See this vitamin D3 article. Is my good health due to the fact that I’ve been taking 8,000 to 10,000 IU/day, in divided doses for years now? The point is to keep your level, measured in the vitamin D hydroxy test at 70 – 100 for cancer control. My level varies between 79 and 102. (Nothing bad happened when I slipped above 100; I just reduce the dosage for a while.)
9. Get at least 15 minutes of natural sunshine in the peak time of the day during the summer months, despite what your dermatologist might say. Just don’t burn!!! Otherwise you are gathering up natural vitamin D the way Mother Nature intended.
10. Bone Broth Soup. (Okay, this is out of order here, but bear with me.) Boil beef bones and chicken soup bones (with and without meat) simmering for 24 – 48 hours. Store in freezer in portioned jars. The soup should gel when refrigerated. This will provide cancer-fighting nutrients. There is a whole book on this subject by Sally Fallon of the Weston Price Foundation. Go to their web site for more info: Weston Price Foundation.
11. Coconut Oil and other Fats. After all these years of being told to eat less fat, it turns out these saturated (and other) fats are healthy! You’re supposed to eat at least three tablespoons of organic, UNrefined coconut oil/day, possibly six tbsp/day — all in divided doses to keep the level in your body even. Coconut oil is an anti-pathogen, meaning that it kills bacteria and other germs. This supports your immune system in its fight against the CLL cells. More of your immune system is available. Butter (not margarine, which is a fake, synthetic food) is also healthy and if recommended for every day use. Take care not to overdo. I LOVE coconut oil mixed with toasted carob powder, and tend to overeat this, which tends to make me put on weight… so watch your quantity. You can get too much of a good thing.
12. Alkalize. Every morning I have a 16-oz glass of filtered water with 2 tbsp ACV (apple cider vinegar) and 1 tbsp organic lemon (my husband juices the entire lemon to make use of the d-limonene in the peel, which is also supposed to be anti-cancer, but you don’t have to do that, of course). At bedtime I have a 12-oz glass of filtered water with 1/4 to 1/3 teaspoon baking soda. These drinks help keep my PH at about 7, which is desirable for preventing and treating cancer. The other good news, you are pre-, post-, or just plain menopausal, is that, at least for me, the baking soda before bed has eliminated hormonal night sweats. Yay! Easier to sleep. Measure your PH level with strips you can buy online or at your local healthfood store. My favorite online supplement/health item source is iherb.com. Very reliable and reasonably priced. (Please note that I am not an affiliate; this is an absolutely NOT for profit site.)
13. Blood test regularly. I really don’t like going to the doctor. I really don’t, especially not to the hematologist where I get to see people getting chemo, and a lot of sick-looking people in the waiting room. It is demoralizing! So what I do is I pay out of pocket for blood tests between visits (which are getting farther and farther apart). I go to Direct Labs and order a CBC and whatever else I think I need. (I have anemia and thyroid issues — and hair issues — as well as CLL.) You place your order online. It lets you know what location(s) local labs are available. You print out your order (requisition is emailed to you), take it to the lab, get the test, and in 24- 48 hours, most test results are available. In my case, my co-pays and deductibles are so high these days that it makes sense to pay out of pocket. If I became concerned, I would go to the doctor. (Just saying.) But in my case it’s been a great way to keep score and get an idea of what’s working and what isn’t. I also mail a copy of the results to my hematologist so we can be literally on the same page.
I guess I will end at Lucky 13. Please post comments on this and other pages, and I promise to get back to you. If you’d like a more personal communication, I can be emailed at cllalternatives @ gmail.com (no spaces). Wishing you good health and peace! – Denise
Posted by: Denise on: June 11, 2015
First, I have to tell you that I’m normally pretty anti- any kind of conventional cancer or leukemia treatment. That is, unless there is a proven record of success, measure by CURE!!! Much of the chemo treatment has abysmal results. The researchers, and the medical establishment in general, measure the extension of increased lifespan in MONTHS. Read the research for yourself. If you can. It’s very depressing.
So when I tell you that some of the new information out there is promising, I truly mean it. They (“they” being the conventional ones out there) are working on ways to get those of us with CLL well. This is a new concept.
The first took place at the University of Pennsylvania. Check out this link: http://www.uphs.upenn.edu/news/News_Releases/2011/08/t-cells/
Posted by: Denise on: June 11, 2015
My White Blood Count (WBC) has never gone done and in fact always been increasing. To me that’s the real indicator. This abnormal and steady increase has crowded my arteries and I have trouble even going for long walks. Specially, where we live there are hills in our neighborhood and it’s a huge battle to get back to the top. I must say, I am not overweight and used to regularly exercise (jogging, etc.). Something I terribly miss now.
The two herbs I am currently trying which seem to help me the most are: Pau de Arco (Taheebo tea), and Astragalus. Especially the latter which I take in liquid drops form (from Wholefoods store) seems to give me enough energy to get through the work day. Do you do anything to decrease your WBC?
There are a few things that HAVE worked, but they just haven’t gotten me all the way well. For the WBC (which we’re supposed to watch so closely) the very best that I’ve done is to go on a non-burnt diet. This means that I do cook food, and I even eat meats, chicken etc. (not to excess, but I eat them) but…I always slow cook and never, never eat anything browned, grilled, etc. I just abstain from eating if that’s all that’s available. My highest WBC was 47, and now I’m in the low 20s and holding for over a year. I started in January 2013 and have been holding steady since. I will not experiment with trying the burnt food again, that’s how positive I am that this was an important factor. Now the low 20s still means that I have CLL (the diagnosis; I try not to own the actual CLL : ) But this has been an important change, at least for me. In my previous life I LOVED burnt food, ate the burnt potato chips, liked grilled meats with burnt fat, carmelized onions, you name it.
How to do this: I make soup and stews every week, and then we eat the leftovers. It’s very efficient and makes it easier to not be cooking so much every day. After the initial dinner, we have the meats (chicken, beef, etc.) for lunch only along with fresh, raw vegetables, and try to have vegetarian dinners, sometimes with fish. Also I eat eggs several times/week. Either poached or very slow-fried (so there’s zero browning).
The other thing I would suggest is getting an infrared sauna. Look into the Thersauna and the Clearlight; they are the two with low EMFs. I’ve had no experience with this yet, but several, many people with CLL have reported to me personally that this always lowers their WBC. I’ve been late in getting one, but it is on my current to-do list. It’s expensive, but (as Hessel Baartse would say) it’s cheaper than a funeral. Love the gallows humor.
There is more, much more. And I will be delighted to share with you. Also, the ray of hope is that “they” now are coming up with non-chemo solutions, so even if you have to go conventional, it is no longer a death sentence. (It’s still my goal to never go conventional, but it’s nice to know that it’s an option.)
I hope this gives you something to chew on (not burnt!).