CLL Alternatives

Alive and Well with CLL — 14.5 years now and counting…

Posted by: Denise on: February 19, 2016

Me and Peter with brand new grandson.

Me and Peter with brand new grandson.

I’ve been so busy with my life lately, that I’ve neglected posting here on my CLL web site. The good news is that I’m doing well! My numbers have been improving. I’m stable, and therefore have been able to concentrate on other things in my life: like my work and my grandkids. (Jared, pictured at left, is our fourth grandchild. When diagnosed in 2001, I didn’t know that I’d be blessed to live long enough to see our sons marry and have children.) However, sharing my CLL experience is so important to me. I’m doing well and it’s not by accident. It’s not “spontaneous,” even though that is how a conventional doctor might describe my condition. It might not be “spontaneous remission,” but instead “spontaneous improvement.”

There is so much I’ve done, and so many changes I’ve made, that it will take many, many posts to share everything there is that you can do to try and improve your health. I believe that a lot of what I’m doing would benefit anyone with any kind of cancer—not just blood cancers, and certainly not just CLL.

Unfortunately, there is no one-size-fits-all breakthrough. Not in the conventional medical world. And not in the alternative world. However, (this is a BIG however), the alternatives don’t hurt you. They may be more difficult and require more effort and commitment, but they will cause no harm.

Here is a quick laundry list of my changes:

1. I never eat burnt food or any food cooked at too high a temperature.

2. I stick mainly to organic food, whenever possible.

3. I eat out once or twice a week, tops. This means I take my lunch to work. (I don’t consider this a hardship anymore, but a pleasure.)

3. I ferment my own vegetables, and eat them at each meal, at least a little bit.

4. I drink filtered water and organic herbal tea (specifically raspberry leaf tea, as it doesn’t leach iron and I tend to be anemic).

5. I have a whole orange about 5X/week in my smoothie. By “whole,” I mean the peel and the pith (the white part). The pith contains d-limonene, which is anti-leukemic.

6. I drink a cup of home-made bone-broth soup nearly every day. Several sources have recommended bone broth for leukemia and other blood cancers and disorders.

7. I exercise 5X/week for 15 minutes. On an elliptical, a rebounder (trampoline) and with weights. I’m not an athlete, but still pretty fit for a 60-year old.

8. I get sleep at night!!! It feels wonderful. I shoot for going to bed at 10, and get into bed by 1030 or 11 each night. Since taking a new pill (for my hair, prescribed by an alternative doctor), I’ve been sleeping like a baby. Okay, I’ll amend that: I sleep like a baby without colic. : )

There is probably more, but I’m writing at the top of my head right now. Each of these eight items could be it’s own blog post. And I’ve been asked by my CLL-buddies who write to me to please post some recipes. And I will. I promise. It all takes time and I’m delighted to say that I have a busy (and pretty healthy!) life. But this matters to me. YOU matter to me. So I promise I will get on with it and keep posting.

If you’d like to be one of my CLL-buddies, please write me at cllalternatives @ gmail.com (with no spaces — those are for the mail-bots). And please feel free to post on this article and on this site, because the more we share, the more we help even more of us struggling with CLL.

24 Responses to "Alive and Well with CLL — 14.5 years now and counting…"

Congratulations Denise! Yes you’ve worked hard for the great results.
Michael

I appreciate your story so much today this has been a very difficult daymy numbers have gone up I was diagnosed 2 years ago and had done fairly well then today I spiked up it helped to read what you have been doing do you have a recipe for you bone soup and orange smoothie

Hi Linda,
I’m so glad my story gives you hope — and sorry that your numbers went up. I’ve been through that agony, and it does make for a very dark day. The good news is that I”ve had that bad news many, many times, and still I’ve managed to get past that and start to improve — and also to keep on improving! I don’t have the time (right now) to write down my own bone broth soup recipe, but here is one that is very close to what I do, posted on mercola.com.

About my “Orange Smoothie”, here is the recipe. Don’t worry if you don’t do everything exactly the way I say. You can add or change things to suit your own tastes and needs.

Denise’s Orange Smoothie
Ingredients
1 whole organic orange cut in quarters (includes peel and pith)
4 ice cubes
1.5 cups greens (I boil them briefly to remove the oxalates — but that’s my own issue, not CLL)
a few frozen blueberries
a few frozen raspberries
1 tablespoon grown flax seed (grind in coffee grinder)
1/2 cup organic kefir OR yogurt (grass fed, preferably NOT pasteurized)
3 tablespoons Great Lakes gelatin (I buy it on iherb.com)
water to cover blade
protein powder (I prefer unflavored; my husband likes it with vanilla)
(Note: i use a Vitamix for this drink, which I have for breakfast about 5 days/week)

I put in the ice cubes, greens, orange quarters, the flax powder and protein powder, add the water and then the rest of the ingredients. I slowly bring the mixture to a high level on the vitamix and go on the highest till blended. I add the yogurt (or kefir) at the very end and mix again till smooth. I personally like a very thick and smooth smoothie. (My husband likes it more gritty and watery – yuck. But to each their own.)

I hope this recipe helps. Feel free to write for more questions. You can also email me at cllalternatives @ gmail.com (no spaces).s
Wishing you the best of health! – Denise

I’m interested in your information.

Denise, your example has been very helpful to me. I am also doing well and that is based on 50 little changes in my life – some of them seemed big at first but they don’t now. I think of this as raising my level of health overall and rising about the many chronic conditions that are called ‘normal aging’ but most people. I choose not to subscribe to that program!

Hi Eric, I think we all help each other by sharing what works (and what doesn’t) and just simply lending support. And I agree… 50 small things can add up to much more than the sum of the parts. So glad you’re doing well! – Denise

Hi Denise. I joined Cll Alternatives in 2014, 6 months after diagnosis. A lot has gone on in my life since then, moving house in August of 2015 was a big disruption! I have come back! There is nothing else on the internet that comes anywhere near this forum when it comes to getting help and reassurance. Just had my 6 monthly check up and all is stable still. No “lumps and bumps”, no B symptoms though those lymphocytes keep going up (17 at present). I had flu for 3 weeks just before my hospital visit and my platelets were said to be raised a little. Dr put it down to the flu. Can you tell me about platelets and how they fit into the CLL picture? Many thanks……
Jennifer

Hi Jennifer,
I agree that moving is one of the great stressors of life! Glad you are passed that now. So glad all is stable. Stable is huge. Stable is success! So feel good about that! About your flu, it’s possible that that is the reason for your elevated WBC. 17 is NOT a big deal. I’ve been doing the happy dance because my WBC has gotten that low again — 16.2 at last count. (Highest was 47…Yay!) About platelets, I’ve had problems with low platelets, never with high. A quick Google search shows me that low platelets (like mine) are more of what the hematologists worry about. So if your platelets are high, it could be another issue. Get on Google and keep searching till you find some answer. To keep my platelets ‘up,’ the best I’ve been able to do is to eat (organic, free-range, slow-cooked) chicken skin, and also to have bone broth soup regularly, about 5X/week. I’m sure that these measure would not be harmful to you, but I would do that research first. Knowledge is power. My platelets have been low for

    over 10 years

! Sometimes they’ve returned to normal. Other times they’ve dipped down again. Part of the game is getting those tests and being vigilant–making changes in diet, supplements, etc., to correct it. I know I used to worry that any wrong marker was the beginning of the end. NOT TRUE! Not if we can be pro-active about those markers.

Here is a quote about platelets from a UK CLL Support site:
“Platelets tend to be the first to start dropping precipitously when CLL progresses. Haematologists see platelets below 100 as the criteria for upgrading the CLL to Binet stage C (or Rai Stage-4) and a cause for starting treatment. – See more at: http://www.cllsupport.org.uk/cll-sll/start-here/understanding-your-blood-results#sthash.c95zvo2J.dpuf

Check those numbers again; it was probably low. Either way, feel free to write again if you have more questions or concerns. I appreciate this forum as well. There is knowledge and safety in numbers!!!
All best, Denise

Hi Denise,
So glad to hear you’re doing so well. I’m hoping to keep my numbers in check and as I’ve mentioned to you – you’ve been such an inspiration to me. The hard part for me is try not to worry so much about CLL but do everything in my power to suppress this. I’ve lost so much weight on a plant-based diet and it’s very scary because I never weighed over 115 – yea, go figure! My husband is worried that my eating habits are what will kill me not CLL. I’m now looking for other healthy options to put some weight on. Anyway, I wanted to express how glad I am for you. We’ll be in touch.

Nathalie

Hi Nathalie, Good to hear from you! If it makes you feel better, I was vegan (with white fish once/week) from May 2005 till Fall 2007. I normally weigh about 125 lbs. (Not thin, not fat.) While I was vegan I dropped down to 106 pds, sometimes 104! I had to buy clothes in the children’s department. I felt scrawny. However, in 2007 I had a blood test that showed me my numbers were starting to progress, despite all best efforts. Worse yet, I developed anemia AND osteoporosis. Time for a diet change. First I added back in eggs, two a day. Later I added chicken. My CLL numbers continued to progress, but I didn’t see a choice. I forged forward.

Over time, I find myself following a combination of the Paleo Diet and the foods recommended by the Westin Price Foundation. So I’m back to milk products (but only fermented milk products such as yogurt, kefir, and butter). I eat chicken, white fish, (cod, halibut), and even beef on a regular basis. A caveat: I eat ONLY organic, grass fed, free range animal protein. If I’m out and there is none available, I eat a salad. Also, in 2013 I read an article (somewhere on this site) that stressed slow-cooking ALL foods (meats and veg), as burnt foods raise your white count and cause stress in the digestive system. So I follow that as well, and it is part of my constant quest for good health. Oh…and the eating of quality fats everyday…I eat coconut oil, olive oil, and high-quality dairy every day. This is NOT a weight-loss diet, and I have to watch myself or I put on too much weight. I fluctuate between 124 and 127, normally at 125). I am 5’1″, so I am not a lightweight.

If you’re doing well, stay the course. Keep getting tested, and see where you’re at. But obviously, you don’t have to be terrified if you find you need to make a diet change. You can still be healthy. One quick suggestion would be to eat walnuts and almonds. (Read up in Westin Price how to soak your nuts and dehydrate them before eating. If this sounds too stressful, just buy and eat raw nuts.)

It sounds like you’re being proactive and you’re likely to do very well!!!!

Thanks for writing and sharing your journey with others.
Be well! – Denise

Hi Denise! Hope you are well and happy…. Just a little question… have you used or use oxygen drops? I was wondering if they were useful.

Denise, I have CLL and want to read your news letter. I tried to send you an email but your address didn’t work.HELP!!!!

I have had cll for eight years.
Thank You,
Ed

Hi Ed, Welcome to the club of the reluctant! Sorry you have the diagnosis. I do not have a newsletter, and I should post more. Fortunately, I’m well enough for a very busy life. Still, I do want to share all the things I know about keeping well, most of which can at least do no harm. Please try writing me again at cllalternatives @ gmail.com (no spaces). I will see if I can email you! wishing you the best of health and everything good! – Denise

Hello Denise

First of all thanks .. I appreciate your website. My husband Doug (64) was diagnosed last year with 0-1 CLL. We have been eating organic where possible vegan mostly. I found info at Chris Beat Cancer and with my own experience having Lupus under control when I eat mostly raw vegan. Doug is raw until evening meal then he eats cooked and he does have cod, pollack or scallops 2x a week. Green Smoothies and fruit are staples and he says he has more energy than when he ate standard American diet.

I understand that vegan didn’t work for you. I tried Paleo version for Lupus and it didn’t work for me but I’m willing to try for him if it lowered Doug’s numbers. I totally get high temp food making numbers rise. It certainly is inspiring that your numbers are going down with your diet. Love him to try other things that have worked for you but Doug doesn’t eat fermented foods, nuts or citrus because of eczema which if he avoids those he doesn’t struggle with.

Doug initially lost weight vegan but has held at what we assume is his natural weight. Lately symptoms have increased .. small lymph node swelling back of his head and one in his throat. He’s had chills (and sweating at night overdressing when chilled). Feels more tired than he use to. Turmeric seems to lessen these symptoms or eliminate them depending on how many capsules he takes. He sees his doctor in a week and I have a feeling he will be bumped from 0 to 1 to 1-2.

So my question is whether during the almost 15 years since you were diagnosed if you had any symptoms other than your blood work numbers high? Also if weight loss and numbers increases were main reason not to eat vegan any longer?

With my Lupus life is and has been challenging for 30+ years so this past year has been even more stressful but we are still working (home business) and keeping our sense of humour.

Thanks in advance for your time,
Deena

Hi Deena, I’m reading your note today (December 12, 2016) and don’t know why I haven’t responded to your note. First, I hope your husband (and you!) are doing well. It is my personal opinion that people do well on raw food mostly because none of it (obviously) is overcooked or burnt. It might sound unlikely, but eventually this diet would help Doug with his eczema. I struggled with vulvodynia (genital pain, don’t ask), and for about three years prior to being diagnosed with CLL, I was on a low oxalate diet to control the pain. It worked! But it was an extremely unhealthy diet. It allowed sugar, which I ate to excess. Gluten, ditto. And it prohibited dark green leafy food, as well as many beans, etc. It was with much fear and trepidation that I started the macrobiotic diet in 2005. I promised myself that if it flared up my volvodynia that would immediately stop the new diet. Amazingly, the pain went completely away. I think it had to do with eating no processed food. (no dyes, additives, high-fructose corn syrup, gmo’s etc.) This is because when i resumed eating eggs and later chicken and beef during 2007-2009, I also was in fear that the pain would return. But it did not. My volvodynia (related to fibromyalgia, by the way) never returned. So eating this way—all natural vegetables, some animal protein, minimal dairy, some fruit and zero gluten or processed sugar, and I have no pain. So keep this in mind. Going to an all-natural diet can be challenging, but I’m certain that both of you would benefit greatly. Also, those nuts should be either raw or lightly roasted. (You can “roast” them at home on a cookie sheet, after soaking.) I’m glad you maintain your sense of humor. so much better than crying.

Again, my apologies for the delayed response. I hope you are both well and improving! Please feel free to email me at cllalternatives @ gmail.com (no spaces) if you like. Or respond on this site. Wishing you all the best this holiday season! – Denise

PS Yes, I’ve had symptoms. thankfully, they’ve resolved or become unimportant. I’ve had palpable nodes on the side o my neck, one of them large enough to be seen, but is not disfiguring. I’ve also had neck pain and head aches that were not necessarily specific to the CLL, but I assumed at the time that they were. That’s terrifying, I know. Interestingly, all the dietary and supplement changes have helped with ALL these problems. I’m 61 now and feel much better than I did at age 47. Wish I knew then what I know now!!!

Hi Denise,
First time on this interesting website. I also have CLL diagnosed about 8 years ago. Regular bloodwork and visits to oncologist. Levels not high enough to require any treatment. My partner and I live a very healthy lifestyle. We exercise with various activities, hiking, biking, kayaking (now snowshoeing in winter) and follow the requirements for a healthy diet. We do like the odd treat though. We both like dessert but we’re not overweight. Thanks for initiating this website. I will keep in touch and pass along any information I come across or perhaps some good recipes. Have a Merry Christmas and a HEALTHY New Year. Marilyn

Hi Marilyn,
So glad you’re doing well. And I’m sure your healthy lifestyle helps!!! Yes, please stay in touch. I’m terrible about posting often enough. But the good news is that I’m busy working and watching grandkids. I love my work and love my grandkids, so very grateful to be alive and well…and even improving over the last few years. Wishing you the best as well this holiday season! – Denise

Hi Denise,

Just stumbled on your site. Nice find.

I’m 60 too. I read a great book for guys called Younger Next Year – there’s a version out for ladies as well. By their standards, you definitely are not exercising enough. I recommend the book to you.

Very happy to hear you have been living with CLL for 14.5 years! I’m planning to spend more time on your website after the hectic holidays are over, but I am wondering if you’ve posted anywhere what your genetic markers are that led you to CLL? I’m referring here to markers like CD19+ or CD38- and others. These markers make a great deal of difference in disease progression. If someone had your same markers, the odds are increased that what you’re doing to stay alive is exactly what they need to do too. Of course, what you suggest are a lot of good things to do regardless of our situation, I’m just suggesting that if my markers matched up with yours, wow… I’d be plenty motivated to try something like bone-broth soup!

I was diagnosed with CLL in 6/14 and WBC was around 18K. I was very gradual for awhile, but I was at 57K 6 months ago and now I’m at 150K. I know that isn’t good. (Platelets are rising though. Go figure.) I have already made substantial improvements to my diet but I am not all the way there; I plan to make adjustments in 2017 obviously, and hopefully before I need treatment.

Anyway, open to all thoughts and I am so very happy you are doing so well!

Hi Kevin,
A little time has passed, and now I’m 61. Yay! And still doing well. I’ve had some of that testing done, but I haven’t paid much attention to it. I could look it up…and please remind me right after the holidays. It would involve digging through old files and like the rest of the world, I’m focused on the end of this week right now (and I’m still at work!). However, I have to say that your WBC progression is disturbing and I’m sure that your hematologist is recommending treatment some time soon. I would not delay till the first of the year! Heck, I wouldn’t even wait till after Christmas (but I’d understand if you want to give yourself that much time). The very first thing I would do, if in your shoes, would to read the article I will post shortly. It is from Life Extension, and it truly has extended my life!!! It is all about changing the way you cook (and what you order when out) so that you NEVER eat burnt or dried out, overcooked food, not even toast. I went from 47.5 (or thereabouts) down to the low 20s in just three months by making this one change. Now my WBC has been hovering around 17.3 or so. So I was on that trajectory, whether i know my markers or not. You know what? I believe these markers can change! They are NOT immutable!!! If you do what you should do, you can improve your DNA. Yes, DNA can change for the better as well as for the worse. So get to work ASAP.

All that said, if everything gets worse despite your best efforts, contact me again. Many people have done well with conventional treatment followed by all the alternatives. I hope this is an uplifting rather than an alarming response. Please feel free to contact me via email at cllalternatives @ gmail.com (no spaces).
Wishing you a happy and healthy holiday season!!! – Denise
Life Extension Article

Hi

I’ve gotten a lot of hope out of your blog. I just got my dx, having been waiting on my results for the past few weeks and anticipating that I do have it. Unfortunately I have poor cd38 marker and that is terrifying. I will go reread your post on not letting the fear run away with you, as I feel I have a death sentence looming even though I know that is the shock of the initial diagnosis. My wbc is just 16k. If, as I suspect, I’ve had it since 10/2014 based on a cbc report I pulled out, it’s stayed stable the past two years. But that would also start the clock ticking two years earlier…

This doc (I will likely be switching) doesn’t think food and supplements necessarily help but that they don’t harm anything either. I have to believe that they do help.

One question for anyone here who knows: what about the danger of overstimulating my immune system? Could that hurt me?

Thanks

You are exactly the reason I write this blog. Doctors are knowledgable about a lot. They know all about the conventional route, as that is how they were trained. They deal in life and death issues, and I believe that many of them have become hardened and arrogant. They have to in order to survive. If they cared about each of us individually, they would become emotional (and then physical) messes. I disagree with your doctor. First, DNA is NOT immutable. What we do in terms of diet, exercise, rest, stress, supplements, can and DO CHANGE our DNA. My trajectory has improved over the nearly 16 years I’ve been at this. NO ONE SAID this was possible. In fact, the attitiude was not “if” but “when” I would need chemotherapy.

But lets talk about that. There are now many good alternatives to chemo in the conventional medical world. So if, despite all your efforts, you need conventional help, refuse chemo. There is Ibrutinib, and Idealsilib (Not sure of the spelling, but similar to both those words; look them up). They have very good results with this. People are cured. (Not all, so I still would prefer to do e everything possible at home, on our own.) If your doctor doesn’t think you’re a good candidate for these new treatments and is pushing chemo, change doctors. Go out of town if you have to. A lot of people go to major cancer centers and the treatment is continued at home. There is also the CTCA Cancer Treatment Centers of America, who also think out of the box.

But back to what you can do at home, have you started any of the new ways of eating, etc.? If your numbers are so low, it sounds like you have a great head start and no need at this time for therapy. I think they just like to scare us to death. Don’t forget that there is a profit center in this. Doctors make a lot of cash when a patient has chemo. It’s an evil system, at least in the US. NOt sure how it is in other countries. (I am a capitalist. This is not a political statement, just a statement about our medical system.)

I’m home sick with the flu today, and coughing a lot. It’s not about the CLL, it’s about my four grandkids who share their colds with me (I’m so grateful to have lived long enough to see both my sons marry and have children. Now I expect a full and long lifespan.) IF you’d like to call and talk to me, or “talk” to me directly via email, here is my email address: cllalternatives @ gmail.com (no spaces). If you want to call, I will email you my phone number.

If you haven’t started your program of self-help, now is the time! Let me know what you’ve done so far, and maybe I can help you make a plan.
I totally understand the black hole you feel you’re in, because I’ve been there. Many times. Feel free to write me, and let’s see if I can help. – Denise

CLL is a disease that can often be cured if treated, but is almost certainly fatal if not. This is the policy of a clinic in Australia. They have a waiting list, but for CLL the patient is tested immediately, and if diagnosed with CLL they start the treatment. There isn’t “Watch and Wait Policy”.

Hi Mark,
This is a fairly bizarre comment. I’ve been following conventional treatment news for CLL since 2001 and the only “cure” I’ve seen happened in a teaching hospital in Pennsylvania. The results of this research was handed over to the pharmaceutical companies, where it has languished. It was what I expected at the time. Big Pharma doesn’t want cures. They want treatment, preferably life-long treatment. So what is the name of this clinic? And what is the name of the treatment? And I have to disagree with you about your fatality statement. I’ve been at this for 16 years now and it’s no where near “fatal.” Life is fatal. (None of us are getting out of here alive, if you know what I mean.) If you have curative information, I’m sure people that read this blog would be interested. Please share. Thanks, Denise

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