Category: Uncategorized

CLL: Facing the Fear and Loneliness

I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:

Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.

1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.

2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.

3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).

4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!

5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!

6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.

7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.

8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.

What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it. 

If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.

And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise

PS Writing about your worries here, on the site, really helps others. We’re all in this together!

CLL: Mushrooms and Neutrophils

CLL Mushroom Powder
CLL Mushroom Powder

In a recent email one of my CLL buddies wrote and told me about her improvement in neutrophil count She had been taking  600 mg of shitake, four tablets of Maitake-D Fraction, 1950 mg (3 tablets) of Reishi, and two tablets of AHCC. She noted that her neutrophil count went up to a high normal at her next blood test! Great news!!!

After this success, she experimented by dropping to a 1/4 of the dosage. Unfortunately, at her next blood test, the neutrophils showed a rapid descent. It was no longer in normal range. This CLL friend of mine wanted my opinion of what to do.

Management vs. Cure
Of course, I told her to go back on the dose that worked for her! Not as a doctor (of course) but as a CLL friend. The reason being — and this is so important — we are not curing our CLL by everything we do and all the supplements we take; we are managing it! Let me repeat…it would be wonderful if we all could have a home-made cure. I’ve spoken to three men who feel that they have, in fact, beaten CLL by DIY, home-done efforts. This has NOT been the case for me. I still would be diagnosed today if I had a blood draw for the first time. They would call me in or call me back to give me the hideous news. And yet, here I am, alive and quite well (thank you very much) after 17.5 years at this. Why? Because I am managing the disease, and this is working for me!

Now, why do have the photo of mushroom powder on the top of this post? Good question. Because of this CLL friend’s email, I reviewed my own history, my supplement notes in particular. I used to take the Maitake D Fractions, and that was at a time when I was starting to show real improvement. (At that time, my WBC went down over 20 points and for a change my RBC didn’t nosedive along with it. Whew!) I was also cooking low and slow at that time, and I gave that one thing a lot (maybe too much) credit.

After I stopped taking the Maitake D Fractions (recommended by one of the CLL healed, no less) I substituted by buying dried shitake mushrooms and grinding it to add to soups and stews. Later (I really don’t know when) I started buying organic mushroom powders, and adding a scoop to my smoothies I have about five days/week. The good health, including normal absolute neutrophil counts, continued, and continue to this day.

I mix up the type of mushrooms. The pictured above are just four of the variety that I alternate day by day. If you do a search on each of these mushrooms, along with “CLL” you will see there is evidence that this food (not a medicine) is good for you! It helps people with CLL! The types of mushrooms I take regularly include shitake, maitake, reishi, cordyceps, lion’s mane, and turkey tail. I have no favorites; once they’re mixed in the smoothie I can hardly tell they’re there.

Are Mushrooms ‘the’ Cure?
Do I recommend that you drop everything else and start taking mushroom powder and that this alone will heal you? Not such a good question this time. The answer is NO! Getting cancer or leukemia is a comprehensive process, and so it healing yourself enough so that you can continue to live a good life. All the other pillars that create health matter: clean food, clean air, clean water, reduced/managed stress, good sleep, meditation, finding joy in life; these are ALL critical, and not something that you will find in your oncologist’s office. Perhaps not even in your alternative practitioners office. We need all our professionals, but to be well you have to count on yourself.

What about the Peak Immune? I’ve written about this product before. I am NOT affiliated with this company or any other. This is a non-profit site written only to share and help! I started Peak Immune years ago, at the advice of a Chinese herbalist (himself recommended by an alternative MD I traveled to see in New York.) Peak Immune is an immune modulator. This means that it regulates your immune system to the place it should be. Not ramped too high, and not dropped so low that you are in physical danger.

Peak Immune is not a mushroom. I believe it’s rice bran arabica, in this case a food derivitive. I’ve taken Peak Immune for years (cheapest in the States at LuckyVitamins.com, when you buy via autoship). It has been the one thing for certain that has increased my neutrophils. On the literature it says that it “increases the activity of NK (natural killer) cells.” So when I first started taking it, I wasn’t expecting it to increase my neutrophils But it most certainly does. Now, with the mushroom powder, I take only three Peak Immune capsules a day, and I seem to be holding steady.

You have to test this for yourself. Once again, this is my experience, along with the stated experience of a woman who wrote me recently. It is not harmful; it is a food. The mushrooms are not inexpensive, and neither is the Peak Immune. You don’t have to buy an arsenal like I do, but change it up, one at a time. And if you do try this, and test your results at your next blood draw, let me know — good or bad — how it works out.

Special request: While I do respond to emails, I think it’s kindest of everyone to respond directly on this site, to the pertinent post. This will help people on a search find not only my words, but your concerns, questions, worries, and your own answers and experience as well. I promise you will remain anonymous. It all helps!

As a final note, I am still working on my book. I will check in again, not necessarily “soon,” but please know that it is in progress.

Wishing you peace, joy, and the very best of health! – Denise

CLL Bad Blood Test: Now What?

Reading time with Naomi and Moshe. Life is good!

A young woman in her mid-forties wrote me recently to say how sad and fearful she was because, despite her efforts, her white blood count and lymphocyte count went up. My answer to her was comprehensive, so I am sharing it now in this post.

Dear CLL Reader,

I truly understand about how you feel anxious, scared and nervous. I’ve been there, and honestly, some times I get nervous when I see a new bruise (could be low platelets) or if I look pale (anemia), and so on. However, I’m looking at your numbers, and I can tell you that although they did go up (in the wrong direction), you are still at a very safe place. I wonder if the doctor was alarmed…did he or she suggest that you come in again soon? Or that it looks like you will need treatment of some kind? I doubt it, although some doctors are too quick to prescribe treatment, in my opinion.

And…here’s the important part: at some point I learned that if my doctor wasn’t sounding alarm bells, then I just wasn’t going to get nervous either. What I also learned was to take a day (maybe two) to allow myself to be upset and depressed. Then it was time to do research and find ways to improve the blood test scores. So you’re on the right track by writing me. (Although by no means should I be your only source of answers.) Check each of your markers and do a Internet search. There are many examples below.

CLL WBC natural treatment.I just did this search and came up with this page: http://naturalhomeremedies.co/CLL.html. There are many others. Start searching for this in as many ways as you can come up with the right keywords. I have a friend who is a very conventional doctor.She explained to me that when doctors have no way to cure an illness (think of a cold virus here), they “aggressively treat the symptoms.” I’ve tried to apply this to the different blood markers that we test when we have CLL. You asked about your WBC and your absolute lymphocyte count and percentage. I see from what you wrote that you are eating organic and being careful of what you eat, even when traveling. That’s wonderful! Please keep it up!

The next question is: do you cook “low and slow”? This means at low temperature for a longer time, making certain never to burn or totally dry our your food. If you’ve been grilling or overcooking food, this is a place you can make an improvement.

Eat bone broth soup and fermented veggies. This is more advanced, as in not what people will start to do the moment they decide to take control. However, learning to make your own fermented vegetables provides probiotics that far exceed the numbers in those pills we buy online or in the health food stores! See this article: http://darwinian-medicine.com/ask-eirik-how-many-bacteria-are-there-in-sauerkraut/. And at least three alternative doctors/practitioners told me personally to have bone broth soup specifically for leukemia.  These are both healing foods. The Weston Price Foundation is all about both these foods. They have local chapters that teach classes on how to make your own sauerkraut and other veggies, and also how to make bone broth soup.

D’limonene and CLL. Are you eating citrus? I was doing very well eating whole oranges 5X/week. I had them in my smoothie. (Organic, of course.) (I’m not able to do that anymore for a non-CLL reason, but this is a very healthy thing to eat. The peel has d-limonene, which is specifically anti-leukemia.) So if you’re already having a smoothie, add that orange (or lemon or grapefruit or lime). Here is a study about that from a search on “Dlimonene Leukemia”: https://www.ncbi.nlm.nih.gov/pubmed/17169807

Vitamin D3 and CLL. What about vitamin D3? have you had it tested? Your level in a Vit D hydroxy test should be somewhere between 70 and 100, in order to battle cancer. I takek 9000 IU of vit D3 every day, and test my levels about 4X a year. (It’s a blood test.) I also take at least one vitamin K2 pill/day to balance out my vitamin D3!There are also studies that indicate that D3 helps people with CLL. Here is one from a “Vitamin D Leukemia” search: https://www.oncologynurseadvisor.com/leukemia/vitamin-d-deficiency-increased-risk-leukemia/article/463796/

Other ways to get well. Are you getting enough sleep? Are you avoiding toxins? Are you taking Peak Immune by Daiwa? (check out LuckyVitamins.com, for the best deal.) I have a comprehensive list of what to do in this article: http://www.cllalternatives.com/2017/11/cll-diagnosis-15-natural-things-to-do/.  Please read and re-read this. Getting well is a process. It’s good to revisit things you know you should do, that you haven’t gotten to yet.

Remember that the C in CLL is for Chronic. Generally, this is a slow-moving illness, giving us time to work on our wellness. An important part of getting well is to think of yourself as well, and to expect to be here for the long haul. Visualize yourself in your eighties. Think of what life will be like then. I know it’s really hard to conquer the fear, but there is joy and life on the other side!  I remember when I first became Macrobiotic in 2005. That is what helped me conquer the fear. At that time, my WBC had jumped into the 20s, so like you, I felt the end was near. It wasn’t! But early July, it will be 17 years and counting. If it’s like this for me, it can be like this for you, too. Hang in there, and allow yourself some happy thoughts. Do something fun and get away from it for a while, and then double down with one or two new things to add to your wellness plan.

Wishing you peace and the best of health!
– Denise

Out of the Closet: When to Tell Friends and Family about a CLL Diagnosis

For whatever reason, when I was first diagnosed with chronic lymphocytic leukemia by my original hematologist, he advised that I keep the news to myself.

“It’s stage zero. You have no symptoms; you look healthy. So there’s really no reason to tell everyone you know—unless you want to.”

Unless you want to.

I had no idea what I wanted. I honestly didn’t even believe I really had CLL until my follow-up visit. I was totally expecting them to test my blood and apologize for their mistake. And I knew what I would say to that. “Thank you! God bless you! No harm, no foul.” And most of all… “Good bye!”

Of course, that didn’t happen.

But back to the issue of what and when to tell people. Now that it’s been sixteen years, as of this writing, I’ve learned that most people tell everyone everything. From day one.

But not me. I told my immediate family and one special friend and her husband. I could tell by her husband’s response that he felt like he was talking to a doomed woman. At that moment I knew what I wanted, and that’s what I did for nearly fifteen years.

I told no one.

I felt safe in my anonymity. I told myself I would share my story when I started chemo. At the time, I was positive chemo was inevitable. In 2001 if you look up “CLL” or “chronic lymphocytic leukemia” on Google, the news was not good. It was all about the Rai or Binet stages. And while I was low on both, all the attending information was not encouraging. Even the brochure from the hematologist was a colossal downer. The last section was about end-of-life decisions. How’s that for encouragement?

I didn’t want everyone to think of me as a dead woman, so I kept my mouth shut and swore my family to secrecy. I kept it that way for a long, long time. For years, actually.

It wasn’t until November 2011 that I started CLL Alternatives.com at the urging of my husband. He said it was time to share my story with other people. I wasn’t keen on that idea because I wasn’t ‘cured’ yet and, at the time, that was my personal benchmark. I wanted to be cancer free.

The reason for this benchmark: I’d been reading a site by a man with CLL who was trying just about every alternative under the sun, including artemisinin. Unfortunately, his final entry was a farewell post. His CLL was fatal, his body was riddled with cancer, and he didn’t have anything to add to his site. I was horrified. For him. For myself. I didn’t want to start a site to do that to others.

But still…by 2011 I was already ten years into this thing and it appeared I wasn’t about to sign off just yet. Not only that, I’d been actively researching and trying out alternatives and changing my lifestyle—and seeing results! So I felt I did, in fact, have something to share. So I started my web site, bringing me out of the closet, albeit anonymously. And ironically.

But slowly, some time around 2013, I started telling friends, one at a time. At first it made me uneasy, as if telling my tale would somehow make it more real. And lethal. But things had changed since 2001. A lot of people I knew were living with cancer. It wasn’t quite the sudden and immediate death sentence it had been.

So I told more friends, one by one, especially and always those who had or were close to someone who had a diagnosis. At this point, it couldn’t make the diagnosis any more real than it already was. And it certainly didn’t make the course of the disease any worse. In fact, by 2013, my WBC (white blood count) started to drop as a result of starting a raw food/low temperature-cooked food diet.

At the time of this writing, after sixteen years of living with a CLL diagnosis, I believe I’m out of the closet. I’m Denise and I have a CLL Diagnosis. Here is an important point: because of Hessel Baartse’s web site and story, I’ve learned to refuse to say that I “have CLL.” No. Instead I say I have a “CLL diagnosis.” This separates me from the illness, and I enjoy every degree of separation!

So what should you do if you are newly diagnosed? To tell or not to tell? My answer: it’s entirely up to you. I’d go with whatever feels right. For me, I needed the cushion of years—and wellness—before I could share my story with my in-person friends. I’m so glad my husband encouraged me to start CLLAlternatives.com because I’ve made so many friends, and so many valuable connections. And if I’ve helped a lot of people along the way, well, that’s kind of the point.

CLL Alternative Healing

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 – strategy9@icloud.com

CLL ~ Going Wheat-Free Part 2

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:

  • a skin tag in my right armpit got very active after being dormant for years – it fell off!
  • Lia mentioned that I no longer had restless legs at night – not kicking anymore
  • torn rotator cuff (of two years) in my right shoulder about 80% improved
  • tennis elbow on the same side improved about 70%
  • no cravings at all – good energy all day
  • lost 6 lbs. – belly shrinking

Second two weeks

  • feeling quite joyful and did not connect this until later – naturally elevated mood
  • my chronically runny nose stopped dripping
  • body odor gone
  • lost another 4 lbs.

Second month – mid-July to mid-August

  • enjoying a wide variety of fresh foods – everything tastes better
  • hungry for less food per day than in the past
  • noticing more in nature on my bike and in my kayak
  • lost another 5 lbs.

Third month

  • lots of physical energy – helped friends move – 8 hours of hard labour
  • decided to discontinue statin drug
  • lost 5 more lbs. – total of 20 in 3 months – 11% of starting weight

****************

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

Eric Clark – strategy9@icloud.com

Living Well with CLL — June 2015 Update

DenisePeterDogsSummer2014Living 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

 

 

 

 

 

 

Promising Conventional CLL Treatments

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/

CLL WBC — Lower by Eating Only Raw or Lightly Cooked Foods

Question:
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?

Answer:
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!). 

CLL Lymph Glands Swelling — Reason for Panic?

Question:
I would like to know how your lymph glands react, if that’s ok. When I was first diagnosed there were no signs of enlarged glands, but on my last check up a few pea-sized enlargements were detected in my neck and right groin.  I did however come down with a pretty bad cold the very next day.  Are they likely to go up and down?

Answer:

Yes, I have the pea-sized nodes and I’ve had them since diagnosed. I also have one large CLL node in my neck, thank God it’s not visible! However it’s there; it goes up and down, as do my swollen glands. Here is what works best for me in reducing pressure in my neck when ill.

1. I get plenty of rest by going to bed early. Years ago, I stopped worrying about the CLL being lethal and voila! I sleep better. When I wake in the morning 99% of the time, the glands are down and I can barely find the large node. (I never look/feel for the small ones; maybe they’re not even there any more.)

2.If the pressure in my neck and sometimes across the bridge of my nose persists, I clean out my ears with Debrox ear drops. I follow the instructions on the box for a few days and this generally does the trick. Debrox is in all regular drug stores, not an exotic product.

Oh, and your cold probably had a lot to do with it. An important thought: don’t stress about it! The first word in CLL is “chronic” not “lethal”.  So believe that it is temporary, because it most likely is. Take a deep breath and distract yourself with something pleasant. Believe that you are well, because at this moment, you are!