CLL Alternatives

CLL: Curable? Manageable?

Posted by: Denise on: September 1, 2017

CLL Alternatives

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

10 Responses to "CLL: Curable? Manageable?"

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

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

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

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

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

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

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.

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

173.15.248.9 In reply to Mike.
Hi Mike,
That is a great question. Before I was as well informed (and not so “alternative”) 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

Denise,
Thank you for this great breakdown. Just what I was looking for. It all resonates with me.
Be safe & well,
Mike

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