CLL: Curable? Manageable?
Posted by: Denise on: September 1, 2017
Me (Denise) at my desk at work. Notice the journal, to my left, and my MacBook Air (not visible, but just to the front of the notebook), where I am penning a book about my CLL experience.
Hello, It’s September 1st of 2017, and I thought I just might be overdue on making a post here. An update, if you will. I’m doing fine. Great, even. As a matter of fact I pay more attention to my signs of aging than I do my CLL, which is amazing! When I realign my psyche, I realize that I’m totally grateful to be living long enough to worry about wrinkles! Yay. I’m 62, and I have four grandchildren. When I first started this CLL Odyssey, I wasn’t at all certain I’d reach this stage or status. But I have. And the more I read and learn, the more I believe that it’s not a fluke. Others have done it, and I’m doing it, too.
WBCs and other markers. When I was first diagnosed in 2001, my WBC was a paltry 14.something and I was in Stage Zero. Of course I was still totally freaked out, and gearing up to die sometime soon. Despite all my efforts, my highest WBC was somewhere around 47, in 2012 or so. (I don’t have my Excel Chart with me.) Today, at last reading it was 17.something. Better yet, it’s been in the teens for about over a year. And my hemoglobin, which has dipped as low as the 10s, has been consistently normal, and over 12, for the same period of time.
My magic bullet? I don’t have a magic bullet. And I’m not cancer-free, either. If I went to the doc’s office for the first time and had a blood test, I’d be diagnosed. (I’m working on this, but not at all with the fear factor; I just work to be as well as possible, very consistently.) But back to the magic bullet. Over the years (since 2001), I’ve changed up and tweaked my diet several times. I eat zero processed foods, I buy and eat organic as much as possible. I slow cook all foods, vegetable and animal protein. This means I have soups and stews, and slow stir fries, which all happen to be delish! I eat no sugar or gluten, and the only dairy I eat is grass-fed butter. I’ve gotten rid of all toxic home care and personal care products. (This means I clean my house with baking soda, vinegar, and peroxide.) I exercise on an elliptical trainer, rebound, and lift weights 3-5 times/week. A big part of my daily/weekly diet is home-made fermented foods (sauerkraut and pickles) and bone broth soup. And I take a boatload of supplements, including my 9000 IU of vitamin D3 and four Peak Immune pills (by Daiwa) every day. I (try hard to) get to bed by 10 or 10:30 and get a good night’s sleep. And it is my goal to make my life as stress-free as reasonable and possible.
Okay, that’s my magic bullet. Or my magic ammunition. Sorry, I know it’s not an easy answer. But it works! It’s possible that if I tweaked just a bit more, I could get those numbers down to normal. But honestly, I’m pretty happy where I am. Watchful. Persistent and consistent. (I don’t cheat. Ever.) And despite all those changes, I feel like I live a pretty normal life. We enjoy our grandkids (and their parents), go out with friends, entertain. We even travel. Traveling is challenging, but worth it. We try to rent hotel rooms with kitchens, and bring enough food to make it comfortable. If it’s a weekend away, I just order a lot of salads in restaurants, and eat oatmeal for breakfast. But if it’s a week, and that’s the longest we ever go, we pack cooking equipment and containers to take food with us on bike trips, or wherever. It’s not normal like everyone else, but it works. It’s still fun. I guess it’s our “normal.”
A CLL Alternatives Book. I’ve decided to write a book. I know that the information in this web site is disjointed. I know I should spend more time on it. But despite all my best intentions, I normally do not. But I am a writer at heart. And I’ve started to pen a book that puts all of this information into perspective. And into chapters. This is not a money-making venture. I plan to have the book available as an ebook on Amazon for $0.99 and I will sell the POD (print-on-demand) book at cost. (Whatever they charge me to put it together, that will be the charge.) So whoever needs the book can have it. Once again, the book is not necessarily a blue print for what exactly to do with a CLL diagnosis. Because we’re all different. But…it will be a blueprint for learning and testing until you find what it is that YOU need to do to be well. I’m sure there will be a lot of commonality in everyone’s approach. And keep in mind that conventional allopathic treatment (chemo, etc.) is also not one-size-fits all.
This will be a long process, but I’m making my commitment here. My husband also wants to post videos of interviews and cooking demonstrations. I think the cooking would be helpful. I unfortunately learned how to cook naturally after our boys became adults and flew the coop.
Two Book Recommendations. Before I leave, I have to recommend two books. By rights, they should each be a separate blog post, and eventually (no promises) they may be. Both books opened my eyes and made me see that what I’m doing makes sense. And my results also make sense, too. I will go into no more detail but to say, please read these books! If you can choose only one, choose the The Metabolic Approach to Cancer, as it is most instructive of how to fight cancer with nutrition/etc. However, if you or a loved one has a leukemia or cancer diagnosis of any kind, you deserve to read Tripping over the Truth: How the Metabolic Theory of Cancer is Overturning One of Medicine’s Most Entrenched Paradigms.
Please respond by post or shoot me an email. We’re all in this together!
To your good health! – Denise
51 Responses to "CLL: Curable? Manageable?"
April 12, 2018 at 6:31 pm
Hi Denise,
Just thought I would update you 5 months later.
I did go to a specialist at Ohio State University. They advised me not to take the antibiotics. Not surprised.
I will continue to see the local hematologist and go to Ohio once a year.
I am completely Keto and have been since my last post. My last wbc count on April 1 was at its lowest ever, 12.8! Unfortunately, My IgG levels have continuously dropped every month and now are below normal. As happy as I am about my wbc count, I am getting more concerned with my other low levels in regards to my immune system. From what I search, I guess it goes with the cll and nothing can be done naturally to help.
Anyway, I hope all is well with you!
April 13, 2018 at 2:57 pm
Hi Lori,
Thanks for getting back to me. Despite your concerns, it sounds like you’re doing great! My IgG levels have been abnormal for years! Somehow, probably because of all my efforts, I’m still very healthy. Yes, I’ve had a cold and a flu this season, but so did everyone else at work. And I recovered quickly, both times! So take heart, there definitely ARE things you can do naturally to pump up your immune system. And it’s not all supplements! Keep in mind that our immune systems are all about our gut (our digestive system). In fact, as I healed my immune system, my WBC dropped, and my neutrophils (another immune marker) improved.
Here’s what you can do:
1. Eat fermented food. Seriously. Fermented vegetables have many, many more times probiotics in them than probiotic pills. This is where humans used to get their probiotics before there were pills! Every culture has them — sauerkraut, kimchi, kombucha, kefir. They are delicious and they build your immune system. You can start by buying them. Make sure what you buy is organic and cultured — and refrigerated! Sauerkraut on the shelf in the center aisle of the grocery store has probably been cooked and not fermented. Best yet is to learn how to ferment your own veggies. It does take time, but you are giving yourself time (to live well!) by doing this. Go to Perfect Pickler and buy their contraption. (I am NOT an affiliate; I make zero money on this site!). This is how we first started to be successful in pickling our own food. Now we just “put it up” into jars on the counter. But this product is a great training wheel.
2. Take probiotics, too. Especially until you’re eating fermented food everyday (including pickling your own cucumbers — delicious!)
3. Try Peak Immune by Daiwa. This is a product that absolutely positively has increased my neutrophils. It says on the bottle that it “increases NK natural killer activity.” I know it works for me, because when I don’t take it, my neutrophil level drops…dangerously. Take as directed on the bottle. At this time, I find it the least expensive on luckyvitamin.com, if you buy it with Autoship. i would try a bottle first before you make that commitment.
4. Get enough sleep at night. I know this sounds simplistic, something that Mom would tell you, but it’s true! When we sleep on an empty stomach, our bodies have the opportunity to make repairs and work on enhancing our immune systems. (There goes that digestion thing again!) Don’t eat anything for at least 3 hours before you go to bed, and make enough time to sleep. Eight hours is best, although I do pretty well on seven some times. It is amazing how restorative sleep can be. Try it. It’s luxurious. My favorite nights I go to bed a half hour before I want to sleep, and give myself time to read. I love it!
5. Do your own kind of meditation. I personally have been unsuccessful with mediation in the classical sense (breathing, Om, that kind of thing). However, I like to give myself time, I try for every day, to either write or draw. That’s what gets me away from my thoughts. When I’m writing creatively, or doing line drawings for fun, my brain is in another, very relaxed state. This state of being feeds your immune system. Being angry, impatient, hurt, upset, horrified, stressed, etc. etc., plays havoc with our immune systems. So give yourself 15 minutes to a half hour a day to play. It’s good for you!
I’m sure I’ve just scratched the surface with these suggestions. But, I have to ask you to please stop feeling hopeless about your immune system! That hopelessness is hurting you. And really, you’re doing so well! Don’t waste all your keto efforts and ruin it by getting into a funk. Check out the list, and maybe do some more research on a search engine, and maybe on youtube, and make your own list and start making those changes one at a time. Diet is very important, but it isn’t the only thing. And the other things are really good!
Write again, and let me know how you’re doing.
Wishing you all the best,
Denise
April 6, 2018 at 3:25 pm
Denise your posts are so helpful. I just wanted to personally thank you for taking the time to answer everyone’s questions and sharing in detail what has worked for you. It gives me such hope and peace to know there are others out there who are living with CLL for years. My husband was diagnosed just last week and his WBC is 26. He is having a bone marrow biopsy next Friday in Saginaw. We are from Michigan and after this test are considering a second opinion at U of M. Would you have any suggestions of a good CLL specialist in our state?
We are eating a ton of raw veggies and have been sugar free since February even before his diagnosis last week. I will look into going gluten free and make sure to experiment with cooking low and slow. No supplements yet as he was just diagnosed and has that procedure in a week. This is all so scary and hard but I want you to know that stumbling upon your site has given me such hope and your positive attitude in posts is infectious!
April 7, 2018 at 4:43 pm
Hi Audra,
I’m so sorry about your husband’s diagnosis. I know how terrifying it is firsthand. It looks like you’re off to a good start with your diet changes No, I unfortunately do not know of a good CLL specialist in Michigan, but UofM University Hospital is obviously a good choice. Why don’t you write again when the diagnosis is complete, and let me know how he and you are doing.
Wishing you the best! – Denise
January 29, 2018 at 10:03 am
Hi Denise,
I’ve been reading your website and its been very informative. I was diagnosed with CLL two months ago. I have no symptoms and the doctor said I am at stage zero. I have been on a plant based diet and following Gerson and Chrisbeatcancer. They all say stay away from
meat or fish. You are the exception which makes me confused. Let me know what your thoughts are.
Thank you,
Frank
January 29, 2018 at 4:18 pm
Hi Frank,
So sorry about your diagnosis. I know personally what a gut punch that is. About your question, I will give you a brief history. when first diagnosed in 2001, I changed very little, as I thought I was “eating healthy”. (I wasn’t.) After two or three years, I went on what I call the “anti-cancer” diet. I started eating all organic, but with store-bought dressings, gravies, cookies, etc. My numbers got worse. In 2005 I decided to become Macrobiotic and went with my husband to Massachusetts to learn how in a week-long class. My numbers returned to where they had been when first diagnosed. In one month! So, you would think I’d still be Macrobiotic, but I’m not. (Macrobiotic is beans, greens, brown rice and sea weed, with some tofu and tempeh, and white fish no more than once/week. My numbers stayed steady till 2007, at which time they started to get worse. WBC started climbing. Worse yet, I’d developed tooth recession (from the gums) and osteoporosis. IN 2005 I was 50, kind of young for that, in my opinion. So I started eating eggs again, and slowly worked my way to eating only grass-fed meat, pastured chickens and eggs, and only wild-caught fish. Keep in mind that the majority of my diet is still vegetables. Either raw or lightly cooked (steamed, water sauteed with added olive oil toward the end, etc.). It wasn’t until I also lightly cooked the meats that my WBC started to really drop. Back down to the mid-teens where I’d started. (My highest WBC was 47.8, when I was still grilling my chicken.) Also keep in mind (you might know this) you have to buy your own vegetables and cook everything from scratch. No more prepared foods! It’s tough to get used to, but awfully good for your health!
Now, your question is why do I eat meat? My answer is that I do better when I do! I kind of liked being vegan. I’m an animal lover. However, when I tried re-introducing a lot of rice and beans into my diet, my WBC climbed at the next test. I read a book last summer that I recommend. It is “The Metabolic Approach to Cancer,” by Nisha Winters. It explains the science behind what has been working for me! To be clear, I eat the equivalent of 1 or 1.5 small chicken drumsticks at lunch or dinner. (A deck of card sized of fish or meat…say, 1 hamburger, lightly cooked till done. Cooked at low heat, or in water, never burnt or over-browned.) So a meat serving at lunch and usually again at dinner — not always. The rest, as I said, is vegetables. Breakfast is usually a smoothie with lots of greens, berries, hemp protein powder, and when I’m not nursing a cold, some organic grass-fed yogurt — plain, without that added sugary fruit. I add my own fruit, with only God’s sugar in it.)
This has been working for me. I’m always as good as my last blood test, but in general I’m not fearful about my health any more. Please read that book. It is worth every penny! and feel free to write if you have more questions. Wishing you the best of health! (Stage Zero is a good place. Try not to worry. Fear is our enemy!!!!)
All best, Denise
November 19, 2017 at 3:19 pm
Denise,
Thank you for the quick response. The hemotogist that prescribed the antibiotics is part of a local cancer center here. I did start taking the pills but stopped because I don’t feel it is right. I have read that they can destroy your immune system. Not a good idea when it is already not good. I searched the internet and cannot find anywhere that it is normal protocol. I believe I will get a second opinion.
The whole Keto diet thing is mind boggling! I just spent an hour and a half at the store trying to figure out what I could eat! I am hungry! I Didn’t get much but I am pretty certain the choices I made are acceptable.
What soup broth brand do you buy? Probiotics? Sauerkraut? Pickles?
I am finding out that it is getting the right brands that is difficult. I don’t want to buy a brand of something that is not good for me.
I really appreciate your help and I am grateful there are people like you in the world that share their knowledge and experiences with those of us that are just starting out on this journey.
Lori
November 19, 2017 at 5:41 pm
Hi Lori,
I’m glad you’ve decided to discontinue the antibiotics. I will try and help as much as I can with the Keto diet. It ‘is’ mind boggling until you get the hang of it. Then it’s just how you eat. So hang in there.
Find a few things that you can have. For example, you can get some gluten-free bread, udi’s brand. It should eventually be your goal to have a slice or two a week (or none at all). But you are in transition. So eat this as much and as often as you would eat bread now, with an eye towards reducing this down the road. You might also want to buy organic rice cakes, and eat them with almond butter. I buy Trader Joe’s raw almond butter (it’s not organic, so I guess I’m not so perfect, eh?) I have a recipe for making carob bars, in case you’re really craving sweets. It’s simple: equal parts coconut oil and raw powdered carob. (I buy the coconut oil organic from Costco and the organic raw carob powder by Sunfood I buy online. You heat the coconut oil in a saucepan, add the carob powder slowly with a whisk. Whisk till completely smooth and mixed. Then pour into a flat pan (lasagne pan) and refrigerate till solid. Remove, let warm on the counter and then cut into squares. Delicious! (and very Keto)
Beyond that, get used to boiled eggs, slow-cooked meats (stews, soups, slow stir fries) I stir fry with a little water in the pan, flame on low. When meat is done, I add the vegetables and also cook on low. When almost done, drain the water and add olive oil and seasoning. Delish! Also, you can have some brown rice and quinoa. It’s hard to go without grain. Just try to minimize as much as possible. Your numbers should improve even if you do this much. If they don’t, you can try going more hard-core Keto.
About fermented food brands… look for sauerkraut in the refrigerated aisle. I used to buy Bubbie’s brand. But there are others, usually local, that do the entire process raw. If you have a Trader Joe’s they have raw sauerkraut and other veggies in their refrigerated aisle. For bone broth powder, I’ve been using Great Lakes brand in the green container. A good online store is iherb.com.
Keep in mind that fresh produce is also wonderful. After you stop eating all the processed foods, you start to appreciate the great taste of vegetables — peppers, avocados, cucumbers, etc. (It’s easy to make your own pickles by slicing cucumber into a jar clean from the dishwasher, adding salt water 1 tablespoon per two cups water, and let sit on the counter for a day or two. Taste it. It should be a pickle. Be patient and try again and again. You’ll get good at it.) You can look recipes up on youtube.com as well.
Again, you don’t have to do this all at once. Make a list, and start by having a Keto meal each day. When you’re used to that (after a week or two) step it up to two meals/day. Then three. Buy some books. Look for more support online. There are many Keto and Paleo food sites. I’m not the only one who shares. I learn from others!
Let me know if you have any more questions. I’m sure you will.
All best, Denise
November 19, 2017 at 8:55 am
Hi Denise,
I was just diagnosed with cll last week by a hematologist. I have just bought the book the metabolic approach to cancer that you recommended. It is a very interesting book and makes sense. I am going to give the Keto diet a shot. What do I have to lose. I am finding it hard to figure out what supplies I need to get at the grocery store for switchover. So used to cooking whatever and no worries.
My biggest concern right now is that the hematologist gave me a prescription for acyclovir 400mg 2x a day for prevention of viral and sulfamethoxazole tmp ds 1 on Monday Wednesday and Friday to prevent bacterial infections. I am concerned these will hurt my immune system even more. I have a prescription for 6 months so this is supposed to be long term antibiotics. I am having trouble finding where any one else with cll is taking these. Does everyone take these? Or should I get a second opinion?
I should mention that other than my blood work, I have no symptoms. CT scan was good also. I am on w&w.
November 19, 2017 at 1:11 pm
Hi Lori,
I’m so sorry about your diagnosis. Not fun! I’m also concerned about your doctor prescribing both an antiviral and an anti-biotic as a prevention. I’ve never heard of this. I would consider getting a second opinion. From what i know, it’s my personal opinion that (I agree with you) this could be more of a strain than a help for your immune system. I would not start it till you see a second doctor. If you can afford it, you could go see Dr. Nasha Winters (the one who wrote the book). It took me about 12 years to realize that the main problem was in my gut (digestive system). I’ve been nurturing my digestive system with home-made fermented vegetables (you can buy them in the refrigerated section of Whole Foods, and even in some conventional markets), with bone broth soup (also available as a powder for your smoothie, although soup is best), and probiotics. Antibiotics kill off all the bacteria in your gut, and I’d look up what the anti-viral does. I’m sure it’s not pretty. Instead, I’ve done much better adding the bugs (probiotics and fermented foods — pickles, sauerkraut). You probably wouldn’t feel well on those meds, and you’d assume it was the CLL acting up (when it would really be your body reacting to the meds.) This is just my opinion. But I would definitely seek alternative medical opinion, perhaps from an alternative MD? If you have a local alternative MD Oncologist that would be ideal. But we have to make do with what’s available.
About making the change in your kitchen, that’s huge! I know it. Start by gathering all your processed foods and taking it to a food bank. Then concentrate on buying mostly fresh vegetables (and frozen) and meats (wild-caught fish, free-range organic chicken, and organic grass-fed beef and eggs from these well-treated chickens (If you have a local farmer’s market, that is your best source.) I’ve taken cooking classes, and you might consider doing the same. Check out the Weston A Price Foundation web site and see if there is a local chapter. They often have meetings with cooking classes (where you can also meet like-minded people). You can buy their books at these meetings and also online. I started with a week-long Macrobiotic class in Massachusetts (I live in Michigan.) There are also many Paleo cookbooks available online (and Ketogenic, too). Start slow and make it easy for yourself. Roast some chicken for dinner and eat the leftovers for lunch. We generally have smoothies for breakfast. Check out Paleo and Ketogenic breakfasts, as those as the hardest to start. There are many recipes online. This is a huge topic, and many blog about it. AGain, go one step at a time. It took me years before I got totally on track. (But start with no processed foods, no added sugars, no gluten, and lots and lots of vegetables, and you will be on your way!) Remember to cook all foods low and slow (low heat over a longer time). Overcooked and burnt foods are carcinogenic. My WBC dropped and has remained low since I started just that!
Try to think of the change in diet and lifestyle as a process rather than a project. You’re in this for the long haul. Unfortunately, you can’t do this for 6 months, get well, and then get back to what you were doing before. It doesn’t work that way. If you return to your current lifestyle, you’ll be back where you were before. With this in mind, take a look at the big picture and make the changes one at a time, in a way you can sustain. Find substitutes for favorites. Write me! I’ll always be glad to help.
This is as much as I can jot down right now. Please feel free to write and let me know what you choose and how you’re doing!
Wishing you the best of health! – Denise
November 10, 2017 at 8:51 am
Denise, Congratulations on being good and healthy 16 years after your CLL diagnosis!! I’m very happy for you! I was diagnosed in May 2017 and have indolent CLL, although my nodes are somewhat swollen in a few areas. I may need treatment in the coming year due to swollen lymph nodes, but I’ll be getting a second opinion from a CLL specialist soon. Question: Have you experienced dry mouth or dry eyes? In the last six months since diagnosis, I’ve noticed my mouth tends to be dry and I also have dry eye syndrome. I’ve been told that these are also symptoms of what’s called Sjogren’s syndrome. Any thoughts? I’d really appreciate your comments! Wishing you all the best, Gene
November 10, 2017 at 11:49 am
Hi Gene,
So sorry about your diagnosis. I know how hard that is to take. About your upcoming treatment… are your nodes visibly enlarged? Or only palpable (feel to the touch)? I’ve had small nodes on my neck, along with one slightly larger that is barely visible (but visible) since at least 2005. They are still there, but I don’t bother them if they don’t bother me. 🙂 It’s good that you’re getting a second opinion! About the dry eye and mouth…I had many, many symptoms of everything when first diagnosed. I worried about all of them. I was sure I had fibromyalgia as I had pain that moved from place to place. For a while I kept a calendar of my pains and other issues, until I realized I was focusing too much on the negative. Now I try to ignore any aches or pains or conditions, and I try to never equate them to CLL. In other words, I check things out if they need checking out. But I don’t assume they’re part of CLL (and that I’m imminently dying) because I used to do that and it drove me crazy! You might have Sjogren’s syndrome. Or you might be reacting to a med you might be on. Or you might be reacting to a food or allergen. Check it out, deal with it, and then hopefully put it behind you! The fear factor is horrific in CLL (watch and wait is emotional torture, in my opinion). In the mean time, use eye drops and sip beverages (preferably herbal teas) and focus on something wonderful!! There is a lot out there that isn’t CLL. Wishing you the best of health! – Denise
October 29, 2017 at 12:46 pm
I came across this article while investigating why high temperature cooking can be harmful. An interesting article worth a read:
https://www.precisionnutrition.com/all-about-cooking-carcinogens
October 31, 2017 at 10:28 am
Thanks, Vin. Great article. Did you see the article I posted some time back, from Life Extension? This is a must.
http://www.lifeextension.com/Magazine/2013/1/Are-You-Cooking-Yourself-to-Death/Page-01
November 1, 2017 at 8:40 pm
Thanks for your response and kindness. I have read most of your blog, somehow I missed this one. Thank you for directing me there. With regard to mushrooms I take some mushrooms as well eg
https://www.yeswellness.com/new-chapter-lifeshield-immune-support.html
This one contains most of the helpful varieties. I take a mild dose. In general I only take mild doses of all herbs (usually less than recommended), and I never take many of them at the same time. I think I have the luxury to do that at this stage.
But, I must restate that AHCC seems to be a different beast to me. It is a bit expensive but I think it is nothing like anything else I take. As I said earlier I am not sure what it really does for me at this stage, and I may never know, because of overlapping effect of different herbs and time delay.
Unlike traditional allopathic medicine, I feel herbs are slow to act but probably they have long lasting affect. As said earlier I have stopped taking antibiotics for cold/bronchitis/pneumonia etc. And my bp has become more or less become normal by taking herbs. But, it certainly is a slower process in most of the cases.
I feel that everyone who has a similar issue as mine should experiment with AHCC for a few months (6?) at least. I take 3g, four pills of 750 mg per day, a bit higher than recommended for a healthy person. As far I know it has no side effect. If there is any it is certainly not visible to me.
Another thing I would recommend to those with similar symptoms as mine is meditation. It does put many things in perspective and takes away fear up to some extent. I am a fan of Deepak Chopra. Since I am not very advanced to me all methods seem to yield similar results. Some of the Buddhist techniques are pretty good except I find that they are a bit too rigid.
Another one who seems to calm me down is Joseph Murphy. He has written many books. Any one of them will do the trick. I have about half a dozen of his books. One can download a couple of them free, on the net.
I am not inclined to go for any allopathic treatment. And, I am sure that it will be hard arguing with the oncologist and the GP. So, far luckily the oncologist has not suggested anything except for egcg which is not classical allopathic medicine anyway. Having said all that I really don’t know how I will react once, and if ever, I reach that stage. Body can affect the mind and the will.
Beautiful Lady I wish you well and best of health. Thank you again.
November 4, 2017 at 4:36 pm
Hi Vin,
Aha! This must be the post that I didn’t answer. I have taken AHCC in the past, and don’t recall a big benefit. I might try again. Right now I am taking something called Maitake D-Fractions. Not sure if this is helping either. It’s hard when you’re taking so much to know what is working and not. As a matter of fact, I recently received an email suggesting apricot seeds, which I’ve taken before. They have B-17 (laetrile) in them. I DO take the B-17 pills, but it’s supposed to be best to take the seeds as well. I just bought them and will try again. I will probably revisit the AHCC as well, but one of these positive changes at ta time, making it easier to assess if it’s actually doing anything.
Yes, herbs are slower, but I do ascribe to eating things as close as possible to the way God made them. This goes with herbs vs. pharmaceuticals, of course. Pharmaceuticals can be oh-so-quick, but kick you in the butt on the way out.
You mention meditation. I have tried this and have zero patience for it. Have yet to experience the appropriate high. However… I am an avid writer, and I keep a journal. I do (try) to write in it regularly, which often takes me off to a different state of mind. I’ve tried asking questions of the Universe (because it sounds too full of myself to say I’m asking God, but I think it’s the same thing) and I often get answers I hadn’t anticipated. It is a different consciousness, and I love doing this, but honestly don’t do it often enough. I’ve tried the breathing exercises and regular meditation, and haven’t gotten there yet.
I agree about allopathic treatment, but glad they are there in emergencies. They are good at testing and qualifying and giving diagnoses. (Sometimes their diagnoses are just renaming the problem in Latin; just saying.) But it can be helpful to think of your doctor as a highly trained technician that can dispense information, but who advises only. A person can choose to do what they recommend, but it is NOT an order. They work for us; not vice versa.
Vin, I wish you the best also. I’m sorry this message fell through the cracks. I believe I started answering it at home, then answered some at work, and this somehow got forgotten. Again, my apologies. Going to try that AHCC when my Maitake D Fraction run out. – Denise
November 5, 2017 at 7:28 pm
Denise, Thank you so much for your kind response. Let me clarify if I can. First, you are very kind to spend so much of your time on me and others whom you haven’t met and may never meet. I am grateful.
The only reason I asked because it was written on the message something like: “Awaiting moderation” while you had already responded to one of later posts. Thank you for the explanation.
BTW, you take Peak Immune by Daiwa. I have never taken it but the provided information makes me believe that it may not be that different than AHCC.
Just like you I don’t like taking too many things at the same. I probably will try B 17. I find it hard to buy it in Canada, even the apple seeds and/or apricot seeds. But, I guess I should be able to get them if I spend some time.
I take 1000+ IU of D3. Based on some of the information provided on this site I have increased it to 3000+ IU. I say “+” because many of the herb pills I take have many ingredients. And, some of them do contain D-3.
I wish you everything you wish for.
November 7, 2017 at 6:26 am
Hi Vin, Have you tried apricot power.com? Not sure if they can sell to Canada. I just bought some bitter almonds (also known as apricot seeds). I will report in a post if they actually work. I haven’t compared AHCC to Peak Immune. I must admit that I don’t know why it works for me, but it does. If I were you, I’d consider increasing the vitamin D3 to about 8000 IU and see what you think. I do believe this helped in my stability. And I take way too many things at the same time already. 🙂 Whatever works!
November 2, 2017 at 11:08 pm
This article recommends taking chlorophyll supplement and I3C. I notice that your list does not contain either. Any specific reason for omitting them?
November 3, 2017 at 5:00 pm
Hi Vin,
I’ve taken chlorophil drops before, with no discernible change. This doesn’t mean that it wouldn’t necessarily work. Maybe I didn’t take enough. Maybe I didn’t take it at the right time of day. (with or without food). I’m always struggling with my RBC (red blood count), so it might be a good idea to revisit this. Thank you for the reminder! I’m not sure what 13C is. (I didn’t look it up. Is that a typo? Or something I’m honestly not aware of?) Thanks, Denise
November 3, 2017 at 6:28 pm
Indole-3-Carbinol (I3C)
Note:I am not sure if I said something inappropriate but I notice that one of my comments (above) is awaiting moderation?
November 4, 2017 at 4:24 pm
Hi Vin, No, you said nothing inappropriate, lol. I’ve just been getting messages from you and a new poster (one who posts), and an email from an old email buddy, and I lost track of what I’ve answered. My apologies. This is on WordPress, and once you’ve been approved they automatically post your comment (and I don’t have a list that separates those that need replies and those that don’t) So if I don’t answer immediately (and I often dont’ get to this right away) it can slip my slippery mind. 🙂 My apologies. I will look through comments now and see what has not been answered. – Denise
November 7, 2017 at 6:28 am
Hi Vin, Not sure if I’ve answered this message, but so interesting! I’ve been rereading The Metabolic Approach to Cancer (because I recommend it so much) and she does discuss — and recommend — Indole–3- Carbinol. (Sometimes I feel like my own chemist.) This is definitely on my possible list for future use. Thanks!
November 3, 2017 at 6:32 pm
btw I don’t take either. But, they are both highly recommended in the article about food preparation, you have suggested (above).
October 23, 2017 at 5:45 pm
Hi Denise!
I am a 70 years old male. I was diagnosed with cll about two years ago. It is at an early stage and I am not on any medication, and probably will not opt out for it.
Lymphocytes count has been continuously increasing though at different rates. Though I do do feel lack of energy and some weakness in chess yet the affect seems to be more mental and not physical.
I take many herbs and have changed my life style quite a bit. In particular I take AHCC 3 grams in cycles of 21 days and then a break. It seems to help. Unfortunately I cannot get blood-work done without a requisition from a physician even if I am willing to pay for it. So, it becomes harder to determine which herb is working because I don’t want to take them one by one and then wait for a few months for the blood result.
I would like to thank you for writing your experience and would be grateful for your advise if you have any.
Kind regrds,
vin
October 24, 2017 at 11:28 am
Hi Vin,
I agree that it’s very likely that your fatigue and weakness is mental/emotional. For a long time I had pains and fatigue. For a while I even charted them on a special calendar. But then i found I was focusing too much on the negative, and watching for illness, so I stopped. It was amazing…the less I paid attention and assumed I was well, the better I felt. Of course CLL is not in our mind. We’ve been diagnosed. But leave it to the doctor to get concerned about your symptoms or blood markers. If my doctor doesn’t make a fuss, I don’t worry about it.
Now about testing…I don’t know where you live, but in most states you can order up your own blood (and urine) tests online at directlabs.com. You are emailed a requisition that you take to your local Quest lab. There are several in metro Detroit where I live. You hand in the requisition, they take your blood, and the report is emailed to you one or two business days later (possibly more, if you get fancy about what you order up). The CBC (complete blood count) is a whopping $29.00. Cheap! And totally accurate. This is the same lab the doctors use. You can share the results with your doctor, if he or she is receptive to your own efforts. This is a perfect way to test things out and keep checking. I have mine tested about every 3 months to make certain I’m on track.
About your lymphocyte count mounting, try eating only lightly cooked foods (vegetables, meats, whatever you eat that’s cooked). Nothing cooked at high heat (like on a grill). Nothing over 300-degrees in the oven. In fact, I have an Excalibur dehydrator that heats only up to 120 degrees. I know this sounds too simple to be true, but it’s worked for me for years now. My WBC went down from 47 to 23 in three months, and has been in the low 20s or mid-teens ever since.
If you try these things, please report back in and let me know how you’re doing.
Wishing you great health! – Denise
October 25, 2017 at 10:32 pm
Thank you, Denise. I live in Canada. We can’t get bloodwork done without a requisition from a physician. Americans complain about the medical system there, but let me assure you that it isn’t any better here considering that a big chunk of our taxes go to healthcare. Doctors have complete monopoly. It is changing now but until recently it used to be difficult to get the results at all. They were provided only to the doctor.
They do the bloodwork for me at the cancer clinic ever 6 months and the oncologist provides me with a copy of the CBC. So, far everything is normal (more or less) except for the lymphocyte counts. They are now about 75% of the WBC. A bit high but not at dangerous level yet.
Please correct me if I am wrong. You are saying that if I don’t cook my food at a high temperature then the lymphocyte count will come down irrespective of the food I eat. I am basically a meat eater though I don’t eat beef. But I live on lamb and pork. I eat goat and organic chicken but not very often.
Does it matter how long it is cooked?
Does it mean that if I ate a lot of salad and fruits it will be even better?
All my food must be cooked at temperature 300 degrees or less? I guess you mean 300 degrees F?
That sounds simple enough. I will certainly try.
I take many herbs. Is there any particular herb you would recommend. The oncologist suggested 600mg of egcg everyday. But, green tea gives me high heart beat rate.
I wish the best of heath to you.
October 26, 2017 at 11:17 am
Hi Vin,
I’m not sure there is such a thing as a great healthcare system anywhere. IMHO (in my humble opinion), alternative doctors and treatments should be covered. And it should be recommended PRIOR to conventional treatment. (Don’t get me started.) : )
About your lymphocyte percentage, mine has been in the 90s for a long time. (It does drop below that now and then.) But as I have no other symptoms, this hasn’t been a problem. So your 75% marker isn’t all that bad. What you need to look at is the Absolute Lymphocyte count. That is the one they look at to see if it’s doubling. That number should be there somewhere on your CBC. If you can’t find it, call and ask the doctor’s office what it is.
About your question about cooking, (and eating!) meat is okay… all the animal proteins. You can eat them 2-3X/day. But the portions should be small, more like a side dish than a main dish. Think of the size as a deck of cards, maximum. You really need to eat a lot of vegetables, in a wide variety. Think of all the colors: green, red, yellow, purple. Try to eat all the colors each day (as organic as you can find). Think 80% veg to 20% fruit (organic, fresh or frozen, no additives).
But back to cooking, yes, I meant 300 degrees F. When I roast chicken, I put it in the roasting pan with water up to halfway up the chicken. I add seasonings and then bake/roast at 300 for one hour (covered with foil). I then remove the foil and continue roasting at 200 or less to top brown and make it palatable. (I save the broth and freeze it for future bone broth soup, but now I’m getting complicated here.) You can cook for as long as you need it to be done all the way through. But avoid eating dried out burnt foods. This is why soups and stews and slow-frying in water is a good idea. When I “slow-fry” I add olive oil and seasonings after draining the water. Relish!
I also get heart palpitation from EGCG. Or from any caffeine, for that matter. (I tried the decaffeinated EGCG, still had the racing heart beats.) I drink raspberry leaf tea (it’s not sweet; it’s the leaf) and kukicha tea all day long with no ill effect. I buy it loose on Amazon or herb.com and brew it like coffee in a stovetop percolator.
I certainly wish you the best as well! – Denise
October 26, 2017 at 4:07 pm
Thank you beautiful lady. I will keep you posted. Stay healthy and happy.
October 26, 2017 at 5:54 am
One more thing. Is pressure cooking acceptable? I ask because I eat lentils and it is difficult to cook them at low temperature. But, pressure will do the trick. Thanks and Good health.
October 26, 2017 at 11:22 am
Hi Vin, I think pressure cooking is okay if there is plenty of water in the cooker. That said, I used to make lentils all the time and did not use the pressure cooker. I soaked them overnight in filtered water. Drained and rinsed it in the morning. Brought to a boil with fresh water and sea salt. Once at a boil, reduce to simmer and cover. Keep checking and add water to the side of the pan if the lentils still look undone.
Okay, all that said, please note that I wrote this in the past tense. This is because I now eat very little grain and beans. In fact, I eat all my lentils and chick peas out (with the exception of my Trader Joe’s hummus, which I eat about 2X/week.) I’ve found that eating less grain and beans improves my WBC.
I would try the slow/low cooking first, and when you’re used to that try cutting back on grains. And don’t get me started on gluten. You should stop gluten right now if you haven’t yet! Gluten is not our friend. Much better to have your rice and lentils.
Okay, I think I’ve over-answered your question. I hope this helps.
All best, Denise
October 26, 2017 at 6:56 pm
Hi Denise, I have good news and bad news to report. First the good news. To follow your advise I went and purchased a kitchen thermometer because being a typical NA house I could not find one at home. To start with I wanted to find out the temperature at which I cook. I was sure it would be above 300 deg. To my surprise it is about 210 deg F. Most of my cooking is done on stove. I start with low-medium and go as high as medium-high after the water from the meat (vegetable) is released and I let it be cooked it in that released water with spices. Rarely I add more water. It really surprised me that the temperature at which I cook is about or even lower than the standard boiling point of water eg 212 deg F. I thought it would be much higher. So, the good news is that I don’t cook my food above 300 deg.
Now the bad news. Since most of my food is cooked below 300 deg F I will not be helped by this remedy. Though I do eat some bread of different kinds once in a while and that is the only baked product I eat. I will cut down eating bread even more as per your advise both because of baking and gluten.
I also eat too much meat. I will probably cut down on that as well and I don’t eat enough veges though I take chlorella, spirulina, japanese knotweed etc. in capsule form. I will probably start eating more veges.
Before I leave I want to say two things. First, I am thankful to you for being so kind to me and everyone else who asks for your help. We need more people like you in this world. It was a sheer pleasure corresponding with you. They say there is nothing absolutely positive or negative in the phenomenal existence. Meeting you even on the net is one of the positive aspects of my disease.
Second, I suggest you try AHCC. I take 3g/day. It is a mushroom extract of some kind. At this stage I am not even in a position to say that it has helped me (at all) for sure. But, somehow I feel that it is an excellent product. The one I take is prepared by Quality of Life and I buy it from iherb.com (US). As far as I know it has no side affects. I am usually open to any idea and try for a short period to see if? A second product I am impressed with is a Bell Lifestyle Product called Stem Cell Activator.
I hope and pray that you recover completely and enjoy another 60 years of healthy living. In the meantime if you think of any suggestion for me please do let me know you have my email address.
Best of luck!
October 31, 2017 at 11:17 am
Hi Vin,
I understand your frustration in finding that you’re already cooking at a low level. The best you can do then, is to pay attention to the details. Are you eating any processed foods that might be cooked at high levels (even bread, with its browned exterior?). Do you eat nuts and seeds that have been roasted by the manufacturer? Are you cooking your meats at the same low temperature? Be your own detective and you might find a culprit. I believe it was my overcooked chicken that was my worst mistake. (I liked the browned skin, which I thought was healthy. Wrong!)
I haven’t been taking AHCC, but I do take Maitake in a pill form and also powdered reishi, shitake and maitake powders in my soups and smoothies. Another great thing is a whole orange (including the peel). Put it in your Vitamix (or other high-power blender) and add other good things (you could “eat” your greens this way), and there you have a breakfast. It’s really delicious (if you add frozen berries and a little raw powdered carob)!
I’m happy to email with you, but if you don’t mind…I think it helps other people to read these posts. Not everyone writes me.
Thank you for the suggestions and the good wishes. We are certainly all in this together!!! – Denise
November 1, 2017 at 8:51 pm
I usually don’t eat processed food. I do eat bread once in a while and am I planning to cut down on it. I also eat out with friends once in a while and I don’t plan to change that. Though I will keep your advice in mind while ordering food and/or buying food. I feel very frustrated with the quality of food I can buy, even when I buy “organic” food. I am certainly not impressed with the quality irrespective of the price. Most of it seems to be marketing.
October 31, 2017 at 11:19 am
Vin,
One more thing. It’s been a positive for me, too, meeting like-minded people like you! Most of us with CLL prefer to put all our faith in the doctors. They are there to help, but there is more than one path. Also, I learn and have made changes from suggestions like yours.
All best, Denise
September 20, 2017 at 9:02 pm
Denise,
Thank you for this great breakdown. Just what I was looking for. It all resonates with me.
Be safe & well,
Mike
September 20, 2017 at 8:14 pm
Hi Denise,
I’m so glad you’re writing a book. You know you’ve been my inspiration since my diagnosis (my trusted source of info especially when I need guidance). had some set back because I indulged in too much of the ‘no no foods.’ I know better. I’m not giving up though. A bit down but life goes on and won’t look back. Eagerly waiting for your book. As always, thank you.
Nathalie
October 24, 2017 at 12:07 pm
Hi Nathalie,
I’m sorry that I just found this post from you today. (I’m not always so good at WordPress.) Thank you for writing. I’m so glad it helps others. That is my goal for this site (and the upcoming book).
About your backsliding, a little indulgence now and again is okay. After all, we’re human. Just know as you’re “cheating” that you’re going right back to doing what’s best for your health!
Again, thank you for writing. Always enjoy hearing from you! – Denise
September 18, 2017 at 9:25 pm
Hi Denise,
Now that the cold weather is not far around the corner, I’m interested in hearing your thoughts regarding flu and pneumonia immunizations. Since you were diagnosed, have you immunized? To this point I’ve never done either but it’s been suggested I do.
Thanks,
Mike
September 19, 2017 at 4:57 pm
173.15.248.9 In reply to Mike.
Hi Mike,
That is a great question. Before I was as well informed (and not so “alternativeâ€) I, too, had an immunization in my doctor’s office. But now I totally avoid them, and recommend that everyone (everyone! not just those with CLL) do the same. You can read up on vaccination safety on mercola.com, and there are other sites exclusively dedicated to this topic.
The best defense against the flu is to do all the obvious:
1. wash your hands (frequently) when in contact with an ill person
2. take 8000 – 10,000 IU vitamin D3 during the winter months.
3. Also take 3000mg good quality vitamin C each day (1000mg/meal).
4. Get enough sleep each night — shoot for 8 hours/night, going to bed no later than 10 or 10:30pm.
5. Consider making and eating bone broth soup on a regular basis. You match a huge batch and freeze in serving-size jars. Thaw and simmer for a cupful each day.
6. Either eat fermented food or take probiotics (or both) to maintain a healthy balance of good bacteria in your gut.
If you do ALL this, you should be well. Even people who take the immunizations can get ill, sometimes from the immunization itself. I’ve had the flu a few times in the previous years, but had a milder bout of it than my healthy husband. Go figure.
All this said…if you aren’t really taking care of yourself in the ways listed (there are many others; these are the top six) then consider having the flu shot. Keep in mind that immunizations are taxing to your immune system and introduce toxins to your bloodstream. Most people do not have bad reactions, but I think of myself as being a bit more fragile than a non-CLL person. So ironically, I stay away from them.
Ultimately, the decision is yours. Don’t let MY opinion (or the opinion of your doctor for that matter) bully you into making a decision unless you are totally comfortable with it!
Wishing you a healthy fall and winter! – Denise
October 23, 2017 at 7:49 pm
I used to get cold/bronchitis/pneumonia very often, regular dose of antibiotics was a part of my life. In fact I feel (no proof) that my cll could very well be a consequence of that. That is another topic.
I take the following and it works wonders for me, no more antibiotics.
My wife boils cloves, garlic and ginger in water for a long time. I take the water and store it in the fridge for a few days supply. Every day I warm it up and squeeze some lime in it and a spoon of honey. It works wonders for me.
October 24, 2017 at 11:29 am
Sounds wonderful! Thanks for sharing. I will try this, when needed! We all can learn from each other!!!
All best, Denise
September 9, 2017 at 12:29 am
Denise,
Thank you so very much for sharing your CLL experience. I was diagnosed in June and I immediately went into fact-finding/solution mode – searching the internet for answers to this very unexpected problem. When I came upon your website it felt like I found the hidden treasure. Reading your words gave me comfort and understanding in what was an anxious and uncertain period. You have a great way with the pen, keep writing. I look forward to reading your book and further posts.
Best of health to you and thanks again.
Mike
September 9, 2017 at 9:50 am
Hi Mike,
I’m so sorry about your diagnosis. If it’s only been since June, I would say that you are still in shock. So bravo to you for starting to research. There is a lot of information out here on the Internet, and a lot of it is really good. Check out ChrisBeatCancer.com, as that is a great source for inspirational and very true cancer success stories. Also sign on to the newsletter at Mercola.com. When you sign up you get daily emails with lots of great articles. And please read that book by Nasha Winters that I link to on this page. I’ve just finished reading it through (again) and it is fascinating. Challenging, to be sure. But it is a blueprint for wellness, not only for those with a cancer diagnosis, but for all of us.Just knowing we can do this without having to resort to carcinogenic chemo is a blessing!!!
You didn’t say what stage you are in. If it is stage zero, or if you are suffering no symptoms at this time (other than FEAR, which is totally normal), you have a great prognosis, if you take action and start making changes. Even if you DO have symptoms, you can combine conventional treatment with the protocol in Nasha Winter’s book. Had I had that book 16 years ago, it could have saved me a lot of experimentation and aggravation.
Please stay in touch and let me know how you are doing! – Denise
September 9, 2017 at 3:05 pm
Denise,
Thanks for those recommendations, I’ll check them out.
I was diagnosed when I had bloodwork done for a routine physical that showed a WBC of 16. Doc sent me to a hematologist for further blood testing where Cll was confirmed. I feel incredibly lucky that I went in for my bi-yearly physical, otherwise, who knows how long it would’ve been before it showed up. Interestingly enough, although I’m at 0, for a good chunk of the summer I was tired & fatigued, but all the while changing my eating habits – going gluten-free, cutting out coffee, chocolate (my addiction) and replacing them and other processed foods with vegetable drinks, salads, and as many green leafy vegetables that I could fit into my mouth. Also, i now take Dr. Schulze Superfood Plus vitamin supplement in a blender with a trio of barley grass, wheat grass and alfalfa, bulletproof collagen protein and flax seeds with organic pineapple juice and frozen raspberries. I stay away from milk products, because like you, I get congested. I also use Reishi, tumric, New Chapter activated vitamin C complex and new chapter bone strength which has D3 vitamin K etc. Also, a bit of baking soda in a glass of water, and dr. Stephen langer’s 16 strain probiotics (which are incredibly reasonable on Swanson’s website and Ultimate Flora by Renew Life. Sauerkraut, bone broth and oranges (with as much skin as I can take) are all staples. So, the fatigue and tiredness that I used to have, for the most part are gone. I eat eggs every day and once a week have organic beef, chicken and 2x a week have wild caught salmon. Many of your suggestions have been incorporated into my routine. Dave Lingle is another. Like you, a brave trailblazer that has a great story to tell. Great chatting with you. Mike
September 9, 2017 at 4:04 pm
Mike,
Wow! I’m impressed by your protocol, and so soon after diagnosis! And so glad that you are already seeing results.Keep it up, and you can plan on a full and normal lifespan. Control is wonderful! You are on the trail as well, and lighting it up for others. Please keep writing, as time goes on and whenever you like, to post and let others know that all this seemingly simple stuff really works. We truly all help each other!
All best, Denise
September 9, 2017 at 5:22 pm
Fear is a great motivator for me. As you know, sometimes it brings out our best. Thanks for all you do!!! Definitely keep in touch.
September 4, 2017 at 9:25 am
Morning Denise. I’ve been reading your blog for a friend with CLL and came across your mention of “Peak Immune” by Daiwa.
From the Life Extension website: Peak Immune 4, also called “NK – 3 IMMUNE, is clinically shown to triple the activity of natural Killer cells, also doubles immune system T cell count, increase B cell count and boosts chemical messengers critical to intercellular communication for fighting pathogens, an immune modulator.
A quick search on Amazon and the first customer review says:
Really increases your white blood cell count. My husband has had really low WBC count and after about a week on this he went right into the normal range. I would recommend this product to anyone looking to increase their white blood cells and quickly. Gread product!!!
~~~~~~
I’m baffled. Please explain how one fights an over-abundance of B cells with a product that produces more B cells, because I’m missing it.
Thanks, Linda
September 5, 2017 at 9:35 pm
Hi Linda,
First, I’m sorry for the delay in response. I was off the grid for the holiday weekend. I am familiar with the Life Extension product, but I haven’t taken it. I’ve been a loyal fan of Peak Immune. While I’m not a doctor or a scientist, I think I can explain why this works for both increasing WBC in one person, and only increasing neutrophil count in another. This particular product, with its “rice bran arabinoloxyn” is an immune modulator. To modulate means “to adjust to or keep in proper measure or proportion,” according to the Merriam-Webster dictionary. This means that this will raise your WBC if it is too low and, in my case, raise the neutrophil level if it is too low. I don’t give this pill credit for lowering my general WBC. (Reading about cooking at low temperatures for information about lowering WBC.) According to the wording on the bottle, it increase NK (natural killer) cell activity. It doesn’t say it will increase your lymphocytes. I can understand your concern. In fact, as with all new supplements or products such as this, I recommend trying them and having a blood test in no less than three months (sooner is even better), to see if there is positive, negative, or any effect at all.
I hope this answers your very valid question! You are obviously a very good friend!
All best, Denise
May 28, 2018 at 6:19 am
Hi Denise
I was wondering if you could tell me the best supplements to take that are not too expensive. The ones you consider the most important. My income is very low (widow and pensioner) so things like Peak Immune are out of the question. Best wishes….
Jennifer.
August 4, 2018 at 7:46 pm
Hi Jennifer,
Not certain why I never responded to your very important question. One very important supplement is vitamin D3, which is not expensive. You should take between 5000 and 10,000 IU each day, and get your levels tested each time you go to the doctor. It has to be the vitamin D hyrdroxy test. And ASK FOR THE RESULTS, don’t take the doc’s word that all is okay. Keep track of your numbers. It’s good to have this control. Also take vitamin K2, which works in concert with the D3. This alone has be studied as effective against CLL. If you combine this with the 16 Natural Things you Can Do, link below, you will be making inroads to improving your health.
Wishing you the best of health! – Denise
http://www.cllalternatives.com/2017/11/cll-diagnosis-15-natural-things-to-do/