CLL Support Association
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Healing CLL naturally

Hi there, my partner who is 46 has been diagnosed with CLL a few months ago and the doctors said he wouldn’t need chemo for around 6 months based on his hemoglobin levels. So we thought we would give the healing naturally a go after doing lots of research into it. Each month his hemoglobin has been decreasing and this month it increased and went from 114 to 116. His lymph nodes however have continued to grow which is worrying me as was so excited to hear his hemoglobin increased. He is following a plant based diet.

My question is has anyone on here tried to healed naturally through diet, if so how did it go?

And can anyone explain to me how his hemoglobin could reverse while his lymph nodes continue to increase? I’m probably just being impatient and need to give things more time as I know healing naturally if it works can take a looong time!

Thanks

Carla

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Hi Carla,

I know how much we want to hold onto any improvements in our blood counts or those of our loved ones, but realistically, a change of 2 is within the precision limits of the test equipment. The best precision I've seen quoted for haemoglobin is +/-1 and the worst +/-3 (i.e you could get a change of up to 6 in repeated testing of the same blood sample at that laboratory). I have seen my haemoglobin vary between 120 and 128 over the past year; last test it was 123. What's important is the overall trend. Hopefully that up tick is the start of an upwards trend, but you need some higher counts to confirm it. This is most likely why his haemoglobin has apparently improved while his lymph nodes continue to increase, although if you do see a definite improvement in his haemoglobin, that could be due to CLL infiltration of the bone marrow lessening (which would be rather unusual, because even some treatments used in clinical trials weren't very successful at doing that).

If you are keen on looking into natural ways to deal with CLL, it is essential to understand when there are real changes in haemoglobin, platelet, lymphocyte counts, etc, and not just noise due to measurement accuracy limitations and natural variability. I've covered some of that in this post:

healthunlocked.com/cllsuppo...

There is about a 1% chance of remission in CLL and one would hope that improving our diet and fitness would improve our chances of achieving that. Realistically, most of us would just see the benefits of improved overall health though, I expect.

This post references a good article on navigating complementary cancer treatments: healthunlocked.com/cllsuppo...

Neil

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Thanks for that Neil, we hadn’t even thought about that and now that you say it, i don’t know why we hadn’t. I guess optimism can carry you away at times.

Onwards and upwards though

Cheers

Carla

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Hi!! It may be that he has SLL like me. It’s same as CLL but SLL is mainly in the lymph nodes. Have u asked if he can take the imbruvuca pill instead of doing FCR?

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No we haven’t, we will inquire about it at his next appointment. Thanks

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Might suggest getting B12 and folate levels checked...often need supplementation or injections... pretty common on vegan or high veg diets...

Certainly can effect red blood counts

vegansociety.com/resources/...

~chris

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My husband has CLL, and we have been pesco vegetarians (we eat fish) for years prior to his diagnosis in December, 2015. However, when my husband was diagnosed, I added additional supplements to his regime, like liposomal vitamin C, we stopped eating eggs, and cheese (the only dairy we ate), I threw out all the boxed pasta in the house, we only eat a plant based diet now. We didn't eat processed foods before except for pasta occassionly, and still don't, also no bread or refined carbs, and everything we eat is organic.

I own an organic skincare company, so I make all my own natural, toxic free cleaning products, and when we needed a new bed this year, we even bought an organic latex mattress bed, as it doens't emit any harmful chemicals and isn't treated with flame retardant chemicals.

I guess what I'm saying, is I believe we all need to ensure we are living in a toxic free environment, in and outside our home. We only have organic fertilizer applied to the lawn as well. No pesticides allowed. We can't just stop at the food we eat. It's the whole package - everything we come in contact with that affects our health and well being.

I had read about apricot seeds and indigenous people who have a diet high in B17, which is what apricot seeds are as well, and how they don't get CLL and cancers. What the heck, it's like eating an almond, so he has those everyday. I buy alkaline water for him to take to work, and in our state the water is fluoridated, so we have a water filter that filters for the usual things plus removes the fluoride, which is one of the most poisonous substances, and it's put in our water! Also, only natural toothpaste as well, no fluoride toothpastes.

My husband was also taking B17 in capsule form, and it did appear to be working on his enlarged lymph nodes, which were slowly responding and getting smaller. However, his spleen was enlarging at a rapid pace, and nothing we were trying up to this point was having any impact on it's growth.

So, the doctor said it was time to treat him, and this was at the end of July this year. He scheduled a CT scan and bone marrow biopsy for August, and wanted him to start Ibrutinib right afterward. We had a much needed family trip scheduled for the end of August, and felt it would be best to wait until we got back before starting treatment, in case he had a bad reaction, or it made him feel unwell, we'd be too far from his doctor, and it could spoil his fun.

My daughter had been after us to start juicing. We had tried it once early on after diagnosis, but we didn't get the hang of it, and abandoned it. But, when my husband had to go into the hospital on August 1st to have another stent put in, we took the juicer out again, and began juicing.

And we took the juicer with us on vacation. We rented a house on a lake, in a quaint town, and drove there, so we packed our organic veggies, and he has had the juice everyday since.

We started the juicing just three and half weeks before he was to start treatment. When we went to that appointment, it was quite amazing. His spleen which had been 12cm by exam, (what the doctor can feel) (but it actually was 20cm total as some is under the ribs and can't be felt), his spleen was now 8 cm. It reduced in size by 4 cm, and his doctor had told us from the get go that there is nothing my husband could do to shrink his spleen down. Hmm, not true!

Also, his quite large lymph nodes either went down by 2+cm, or were for the first time not any larger. A few he could hardly feel. And his blood work was all improved. His platelets were in a normal range for the first time since diagnosis. The only thing we added was the juicing. It seemed to be the extra kick his body needed to begin healing. I believe our bodies are capable of miraculous things if given the right "tools" to carry out the job.

Nutrition is never a bad thing. If it a food isn't nutritious and healthy we don't buy it or eat it. We are very strict. I feel when disease is acute, one needs to be very careful about what is put into one's body. For us, this was confirmation we are on the right track.

Others can think what they wish, but our protocol is working for my husband. He has his monthly appointment this week, so we shall see how his body is doing now with more weeks of juicing under his belt.

When I get going, I end up with these long posts, so I apologize for the length, but you did ask what experiences others have had with a natural approach. Most here don't approve of supplements, so I won't go into what else he takes. I also throw the apricot seeds in our weekend smoothies as well. I think it's the combination that is assisting with his CLL. Someone said it takes more than one fire truck to put out the fire - we have multiple fire trucks on hand.

Wishing you both the best.

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Hi Crystalsky and thank you for sharing more of what you and your husband are undertaking to improve your health. Good to hear that your husband's swollen spleen has shown an unexpected and welcome improvement and he has seen an improvement in some of his nodes.

This community does encourage the use of supplements, where evidence shows that they are likely to be beneficial. That's sadly not the case for much of what you are doing:

Regarding the Hunza and apricot seeds/B17/Laetrile - you might find this alternative medicine blog of interest (not that I'm endorsing it): alternative-doctor.com/anti... or this:

cancer.gov/about-cancer/tre...

Fluoride - in common with other salts can be beneficial or toxic depending on the dose. It's very hard to remove from water and many filters that claim to do so, don't. Are you using a filter process that will work per this site's recommendations? thoughtco.com/remove-fluori...

I hope you aren't drinking too much black tea or table wine either - both contain higher concentrations of fluoride than town water to which fluoride has been added: en.wikipedia.org/wiki/Fluoride

Finally your body needs to maintain a very finely balanced pH value to function and counterbalances any alkaline water to maintain cellular functions:

scienceblog.cancerresearchu...

Or this more detailed biological explanation: sciencebasedpharmacy.wordpr...

I admire you and your husband for your hard work in trying to beat CLL, but I would encourage you to re-examine the scientific evidence behind some of what you are doing.

Neil

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I'm new to CLL and finding it troubling that doctors thus far have little to nothing to say about lifestyle habits that could encourage positive health. I wouldn't expect a cure, and I appreciate your comments about looking for evidence rather than taking advice from charlatans, but when I was at a LLS conference and asked the doctor presenting about lifestyle recommendations, he said: "They don't research what isn't profitable, and if recommendations can be purchased in the grocery store, they're not inclined to research those." The dominance of the pharmaceutical companies is a problem in my view... If scientific evidence emerges from work funded by drug companies, what do you think they'll find? I'm not opposed to taking medicine when it's time, but I hear about costs and side effects, and it seems well worthwhile to do all I can to extend W&W. Your thoughts?

Lynn

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There's no denying that pharmaceutical companies focus on making profits by selling pills, either FDA approved OR unregulated vitamins and supplements. Pharmaceutical companies are very much involved in the vitamin and supplement industry, which is no surprise, given it is largely unregulated world wide AND sales value has rapidly grown for years and is approaching that of prescribed drugs.

That said, there is a great deal of good quality independent research published and even sponsored research has value, provided the trial has been properly constructed to correctly determine the effectiveness and risks of what's being investigated. There's considerable independent review of papers from reputable journals and papers do get retracted, e.g. : medpagetoday.com/cardiology... Supplement manufacturers also fund research (and can be owned by pharmaceutical companies too. So who do you trust?

There is enough understanding of cell biology and how our bodies function for pseudo science scams to be identified. We know the pathways in CLL cells that keep them alive and which trigger apoptosis, so we can fairly safely dismiss treatments for other cancers where we know the targeted cell pathways don't exist in CLL.

We focus too much on diet and not enough on exercise:

healthunlocked.com/cllsuppo...

Neil

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Neil,

Thanks for your thoughtful reply. Can you refer me to research done on lifestyle factors that do or don't impact W&W? I've seen research on exercise, with clear indication that it lengthens lifespan of cancer patients generally, and the more minutes daily the better. I haven't seen research regarding CLL that speaks to the characteristics of those who live longer in W&W for the various marker categories.

Has it been your experience that doctors encourage healthy eating and habits that encourage the immune system? Have you experienced recommendations for stress reduction (meditation, yoga)? Maybe the doctors I've been exposed to are just more old school?

Thanks again,

Lynn

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CLL is a rare cancer, so probably the best we could hope for is studies on lymphomas or watch and wait cancers in general. I don't know offhand of any papers. Chris Cllcanada may know of some. The challenge with these studies generally is that they rely on self reporting, which is considered the lowest reliability.

With regard to recommendations, in my experience, doctors concentrate much more on avoiding exposure to infections. Support charities tend to provide education and opportunities for stress reduction activities.

Neil

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Thanks again!

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Quality of Life studies aren't very often done in CLL, the resources tend to be focused on understanding this disease and improving overall survival.

10 years ago CLLTOPICS and the Mayo did the largest QOL study to date... it has aged now, but you can sift through it to see if anything is of interest.

onlinelibrary.wiley.com/doi...

Unfortunately, CLL is genetically driven, and its like a car on cruise-control, that you can't turn off.... all you can do is tap the brake, to slow things.

Good general health, and daily exercise, stress reduction will apply the brake a bit and slow the car, but everyone is different... some are racing along at 100 kms/hr, others are hardly moving and a few of us were fortunate to get the car moving in reverse... 🚗

Body age and obesity are factors you can change as you see fit, other comorbidities are far harder to change, how you do that is up to you...

But as Chaya from CLL Topics used to say 'there are no quick fixes in CLL' and 'nobody has more skin in the game than you do...'

Here is a 2 year old study from the Netherlands...

ncbi.nlm.nih.gov/pmc/articl...

😊

~chris

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Thank you so much, Chris, and Neil for facilitating the connection between us. Chris, I found both articles you referenced to be very interesting. Clearly people with CLL, even in W&W, have Quality of Life (QoL) issues, notably with emotional QoL. Negative impact on emotional QoL was seen to a greater degree than in a population of folks with other cancers... so it seems it isn't just distress at the diagnosis of the big "C", but possibly the state of being given an incurable diagnosis with nothing immediately to be done about it (perhaps).

Both articles suggest that there ought to be more attention to emotional state for CLL patients, especially in W&W. So I continue to wonder about the idea of research into QoL comparisons of people who take a more active role in their health condition versus those who are more passive. If people have emotional struggle with this diagnosis in W&W, even in the absence of serious physical discomfort, and may spend years in W&W, wouldn't it be worth it to discover what helps relieve that distress?

As I've said previously, I don't expect that changes in my eating and lifestyle will cure CLL, but I'm certain for me that taking charge of my lifestyle choices (eating/exercise/stress management), and developing some coping strategies to support immune system functioning, both create an improvement in my QoL. Wouldn't it be great if doctors could have substantial information to share with newly diagnosed folks that would impact their emotional QoL... whether or not it impacts immune system functioning?

Do you know of folks who are researching this topic? Again, I really appreciate those articles as a start to a conversation that identifies a problem without suggesting remedies. The condescension that I sense from medical folks about "alternative" approaches seems disappointing, given they're not appearing to offer methods for relieving the QoL issues that the research has revealed thus far.

Thanks for engaging with me in this conversation... this is how I cope ;)

Lynn

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Thank you for sharing. I have recently started juicing also. Can you tell me what specific veggies and fruit he uses ?

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There is a comment below where crystalsky talked about juicing.

We use carrot, beets, kale and turmeric.

Cheers

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Thank you :)

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Dear Crystalsky. I have added more 'fire trucks" in my new reply to Woggysmith. Thanks for yours. Patrick

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I have been diagnosed with CLL, and have been reading a lot of books on healing cancer naturally. I became a little discouraged never finding someone talking about healing CLL, mostly cancers with tumors. Finding this site and reading your post has sparked new hope that all the juicing, vitamins, tinctures, Essiac (A Native herbal cancer remedy) diet can make a difference with a blood cancer! Where would I find apricot seeds? I am having painful twitching in lymph nodes, and am thinking these seeds could be helpful. I really want to let you know how hopeful I feel reading your post. I will continue my juicing. I need to be more diligent in eliminating toxic products from our home and body...how are things going with your husband? Please keep us updated, we truly care for you! Stephen and Jaye

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Hi Hummingbirdflies,

Every time I answer someone's question, I get scolded for promoting non-scientific methods of treating CLL (or namely non-pharmaceutical methods), so I think I should private message you regarding the apricot seeds.

I was even scolded for signing the praises of a plant based diet. Good nutrition with real, pyhto-acitve food was frowned upon! How can eating amazing fresh fruits and veggies be a bad thing? And encouraging others to avoid GMO foods, processed food, etc. If someone can afford to buy a box of macaroni and cheese, they can certainly afford for instance, to buy an apple instead. But, I was scolded for this.

Anyway, my husband is making his doctor very happy. He said he is at a point where other of his patients have taken nine months to get to. My husband did start Ibrutinib this last September, due to his huge spleen, and complete lymph node infiltration, which were also large and impacting his other organs.

However, he takes B17 from apricot seeds, consumes 15 apricot seeds a day, and he also takes Essiac, vitamins, minerals, and COQ10, to help ward off any heart problems due to the drug. He takes others, but again, I won't mention them here.

Very recently, the British Medical Journal reported on a woman who healed her multiple myloma by taking only cucumin. She is now cancer free. It's not CLL, but it's like a cousin to CLL. There most likely are people who have healed their CLL following a natural protocol, but not enough known cases to be reported. One needs to begin a healing protocol at diagnosis, before needing treatment, because to refuse treatment when it's critically needed would be dangerous no doubt.

My husband progressed very quickly. We didn't have a lot of time. It takes time to work. However, at his appointment that was made for when he would begin treatment, his lymph nodes had reduced in size by half, his spleen had reduced in size by 6-8 cm, and his blood work all improved. We should have said right then and there, that we wanted to wait until the next month's blood work and appointment to begin, if needed. Because once they have you on a pharma drug, it's hard to go back.

My husband will have his blood work done tomorrow, so I can let you know how that goes. He feels marvelous, so I can only assume things are still going in the right direction. All his lymph nodes and spleen are back to normal size.

Thank you for your kind words. I'll message you the info.

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Hi Crystal.

Not scolding ... was reading up on the Apricot seeds and I found this on wiki.

An apricot kernel is the seed of an apricot. It is known for containing amygdalin, a poisonous compound. Together with the related synthetic compound laetrile, amygdalin has been marketed as an alternative cancer treatment. However, studies have found the compounds to be ineffective in the treatment of cancer, as well as potentially toxic or lethal when taken by mouth, due to cyanide poisoning.

I read all the posts looking for things that may help us, but I find the Apricot seed a little frightening.

This may also be the same for Grapeseed that I have started taking, and other seeds like apple ...

I will be keeping a close eye on the Seed extracts as I think there could be something there that could help us even though science cant spot this yet ...

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Hi Eric,

I am not deterred. Perhaps, with a very large dosage of amygdalin, and a large quantity of apricot seeds daily, one may feel sick to their stomach. That is a sign to reduce the number one consumes. Both my husband and myself have been eating a small number of seeds a day, and my husband takes 1000 mg. of B17 (amygdalin) a day, and look, we are still alive!

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I've taken apricot seeds daily and I'm here.😁

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Read SeymourB's response in this post about the safe dose limit and lack of evidence for apricot seeds: healthunlocked.com/cllsuppo...

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Thank you Neil, will do👍

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Hi Hummingbirdflies.

Sorry for the late response, I haven’t been in here for a while.

I’m glad this post has helped you.

I agree with Crystalsky. I think she is a wise lady.....I think your questions have been answered already but wishing you lots of luck on your journey!

My partner is still feeling great on his diet, he still has not needed chemo which is great.

We are trying to get Ibrutinib also but here in New Zealand only chemo is funded under healthcare for the first treatment. As he is Australian we are trying to see if it’s fully funded there. Anyone know?

Cheers

Carla

Cheers

Carla

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Hi Carla

I am in Australia

I think it is funded here.

Probably $40 price was published in paper a while ago.

How is sylvestrol platinum working?

Thanks

DS

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Hi crystalsky I was wonder about the juicing that you are doing.... would you share your recipes?

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Hi Weldcraft,

I have sent you a private message with our recipe.

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hello can I also please get these recipes ? My best friend just got diagnosed on Wednesday and would love to start juicing. She's at a stage 0 CLL.

thank you!

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Hi camackes, I sent you a private message with our juicing recipe.

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What type of juices did he drink. I am awaiting confirmation that I have cll....I've juiced for the past 8 years and have reversed my type 2 diabetes. I will look to really increase my juicing to see if I can improve my blood plates

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Crystalsky , it is great to read what you are doing and the positive results . Would you able to share more detail on what juices you are making and the quantities being consumed daily . I also have quite the regime which includes frozen sprouted wheat grass and some juices but I feel I need to add more juice . Anything you can share would be most welcomed as we have to help ourselves while we are able to. Please keep posted his progress.

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We juice the following, which makes a batch lasting for a few days. Everything is organic, unless it's unavailable in organic:

15-16 large carrots, 4 cucumbers, 3 lemons, 4 beets with the leaves/stalks, 1 bunch of tuscan kale, 1 chunk of ginger, 3 radishes, 4 stalks of celery, 8 apples with skin and seeds, 20 strawberries. I store it in glass jugs in the fridge. Need to shake before pouring as it settles.

My husband drinks 8 ounces in the morning and 8 ounces in the evening.

We have a Jack La Lane juicer, which I don't think they make any longer. It's a bit of a pain to clean up, but well worth the health benefits.

It's concentrated nutrition, feeding the body with amazing nutrients. As the father of medicine said, "Let food be thy medicine, and medicine be thy food."

Synthetic drugs are hard on the body, because they aren't recognized by the body. They aren't found in nature. They are a foreign substance. I believe Mother Nature has provided a cure for any aliment that will befall man. We just haven't discovered them all. But, pharmaceutical companies are only interested in what they can cook up in the lab and patent. That's their business.

I won't defend our choices. It's what is working for my husband. He is in good health otherwise, and good nutritional choices only help to support our body's natural functions. Others can do as they wish.

We believe in whole, nutritious, mostly raw food. Of course no alcohol, sugar, processed carbs, junk food, soda, processed salt, bad fats, and no GMO foods, etc. We do not consume foods made with soy or canola oil, or use those in any way. However, if you are eating a mostly raw, whole foods diet you won't have to be concerned about consuming soy or canola oil.

I actually will be ordering wheat grass seeds to sprout myself. They apparently sprout quickly, and it's so healthy. Currently, my husband takes an organic wheat grass supplement, but direct food sources are of course preferred.

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Crystalsky, thanks for sending your juice recipe and other info . My hat goes off to you! It takes a lot of dedication and effort to do what you are doing.

I’ve been juicing on and off but I needed a push to get it back into my regime. Thanks .

Just a little more about sprouted wheat grass , one has to be careful about mold being in it. You should be ok as you’ll be doing your own. The frozen organic sprouted wheat grass I use is to be drank without mixing. If you mix it in a smoothie or juice ++ it destroys the enzymes . Lots of info on their web site dynamicgreens.com

All the best !

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I have SLL, while my blood results are fine, I can feel new lymph nodes slowly getting bigger. I am planning on juicing, I'm just in the process of trying to figure out which juicer to buy. Thanks for the recipe, I will try it, hopefully soon.

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Thank you for your descriptions Crystalsky. I hope you maintain your positive attitude, it helps. Bests Patrick

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Can I add that juices apparently do start loosing their nutritional value after around 20 mins so is always best to juice freshly or kept them in a mason jar filled to the top to avoid oxygenation, then they keep for 24 hours apparently. That’s what we do anyway, Juice every morning and put in mason jars for that day.

But I’m sure there would still be some benefits just thought I would add if it helps anyone.

Cheers

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any chance you send the recipes to us Brother at 56 diagnosed with CLL

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I am pleased to read that your efforts seem to be producing results and in eliminating all toxins you must be giving your bodies every assistance.

The only problem I have in reading your account is that for many years previously you seemed to have been followed a similar regime but your husband still got CLL, as of course we all have otherwise we wouldn't be here! You also mention he needed to have another operation for an additional stent. I hate to sound really cynical about your post but I was very shocked when I was diagnosed with CLL but was told there was nothing I had done which caused it. I used to play football regularly, took part in martial arts, ran marathons and actually took men's keep fit classes twice a week!

It just seems to me that for all your previous healthy living he still did not avoid the bullet!

I do however admire what you are doing and if it works for you more power to your elbow.

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Doctors always tell their patients they haven't caused their cancer. Regardless, the state of our environment is having a detrimental affect on the health of everyone on this earth. Pesticide use and GMO foods are destroying our soils, and wrecking havoc on Mother Nature. We need to arm ourselves by taking the best care we can of our bodies.

My husband was an avid golfer in his younger years, and he told me he would lick his golf ball to get it clean. Ewww, I know, but that ball was rolling around on grass treated with fertilizer and weed killers. He didn't always have the best lifestyle. He smoked for years. He quit. He started again. He quit. He started smoking cigars, then skinny cigars, which to me are just like cigarettes but in brown paper. He ate red meat (I didn't), he had a sugar tooth, he was overweight. He didn't exercise. More people who are overweight apparently get cancer. Or maybe the overweight people are eating too much sugar, which contributes to being overweight - who knows.

Finally, I convinced him to take better care of himself, and he began playing racquetball ball four times a week, and lifting weights. He worked with a trainer, and lost almost 40 pounds. He ate better, and finally gave up red meat. But the damage was done. He had a heart attack five years ago, and had a stent put in.

I feel if he hadn't been active at this point, it would have been fatal, as it was in his main artery. But the heart is a muscle, and his was strong and otherwise in good shape. And finally, he stopped smoking. It took a heart attack for that one to happen.

So, my husband has not been a pillar of health, or a healthy lifestyle all his life. So, perhaps all these assaults eventually led to his cells mutating and becoming cancerous. Perhaps, if he still was following that way of eating and living, his cancer would be in a worse state. So, when you say, "for many years previously you seemed to have been followed a similar regime but your husband still got CLL," you can see he hasn't followed this his whole life. He did contribute to his health issues. We can improve our health obviously by being active, and eating a clean, healthy diet. And not smoking of course.

Knock on wood, he doesn't get sick, hasn't needed any immune boosting injections, and he feels good. That's all I can tell you. It works for him.

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Thanks so much for all the information crystalsky you have shared. I really appreciate it. And congratulations on the progress you have made. I know how much time and effort goes into this lifestyle.

I know not everyone is a believer and each to their own. I believe diet can cure many illnesses and we are going to try and do it this way so it’s very refreshing to hear from you.

We do the juicing every day, I make his juices of a morning and store them in mason jars filled to the top so they don’t loose nutritional value and he takes them to work, he has 3 8 ounce juices every day usually carrot, beet, carrot and turmeric. We do all organic and I have just started growing my own veggies as it’s spring in New Zealand. We do the no sugar, no processed food, no alcohol etc as you do. But where we might be going wrong is the carbs????

So your husband doesn’t have any brown rice? Oats or home made gluten free bread?

My partner has lost a lot of weight when we were completely raw he was just getting too thin, he is 6.2 ft and is now as skinny as a bean pole so I started making my own gluten free sourdough. Brown rice sushi or home made gluten free pasta with flaxseed egg for dinner and he has oats for breakfast.

How did you avoid weight lost? And what type of meals do you make for your husband. My partner doesn’t cook so I do all the cooking for him and we have very young children so it’s nice to occasionally cook a meal we can all eat.

He has also been having vit C by IV and the sachets also.

I will look into the b12 now so thanks for that.

Thanks again. Carla

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Hi crystalsky,

Thank you for writing about all that you do to try to follow a healthier lifestyle. I for one believe that it is worthwhile to give it our best and incorporate what we see fit into our daily lives even if it means taking our chances in some cases .

I mean...not every-single thing has been thoroughly researched and even when when we think they have, it turns out there's suddenly a new finding, so there's plenty out there that we still don't know 100 percent.

Anyway...kudos to your husband for having made so many changes and giving up a variety of "vices". I say that because I just had to give up sugar/carbs and I still find that to be the most difficult thing in the world...haha!

So...good thing I don't smoke or drink because then it would all be just too much for me...lol!

And while I give kudos to him, I give even more to you, for being so instrumental in all these changes....and I enjoyed reading about all that you're doing and at same time thinking I wish you could both adopt me, so I can too enjoy all those benefits....LOL!

Just kidding of course!! But keep up the good work and best wishes for continued positive results!

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Thank you so much for your kind words. Sugar and carbs are addicting. But believe me when I tell you, before long you will no longer miss them, and you will instead be craving real food, like munching on organic carrots and humus, or pistachio nuts. Hang in there, it gets better - in fact - it gets great!

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I don't think you can heal CLL with healthy living but you might slow down the inevitable. Start thinking about treatment now, FCR is the old gold standard for treatment but chemo is poison and akin to 'Carpet Bombing', whereas modern treatments are 'Guided Missiles'.

My diagnosis, probably like everybody else's, after the shock, sent me looking for remedies.

I tried Oriental medicines said to have worked, like Red Palm Oil and Green Tea etc., some times my levels went down, and I thought I had the cure, but eventually they went up again and after seven years of W & W I needed treatment.

So live healthily anyway, cut out alcohol, it is poison, reduce salt and sugar, lose weight if you need to, exercise daily and you may extend your W & W. There are some that need treatment on diagnosis and some that are thirty years diagnosed without treament and who knows by the time you need treatment they may have found a cure. A cure would be nice but treatment that gives us a full life is just as good, we are none of us here forever!

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as long as we are writing about non-oncological options, I have a sense that CLL (and most cancers) are both genetic and metabolism based. After my CLL diagnosis I left a very high stress job. My blood tests show a marked improvement in my counts. Not a cure (of course) but I believe I've slowed the progression. I also have maintained a meditation routine, exercise routine, cut red meat, gluten, lactose, and sugar. My routines are centered around reducing inflammation from things I eat and think. I'm interested to hear more from those who have made lifestyle changes and to see what the results have been.

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I am doing the same. My ALC is slowly climbing but still in the normal range. I took 3 months off this year before returning to work. My ALC was exactly the same before I took the break and then after the 3 months. After being at work for 6 weeks, I had blood work done for my family doctor and my ALC jumped 30%. I reduced my workload, hopefully it will slow things down for me again.

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A few months before diagnosis with CLL I had rough time with a strange skin rash that led me to Cleveland Clinic Integrative Medicine Dept and a recommendation for healthy eating, more exercise, management of stress, and attention to sleep habits. I too had left a job that was absurdly stressful. Since changing my lifestyle and leaving heavy sugar, fat, and couch-potato-life behind, I feel much better. Given that, my diagnosis of CLL was a shock, but a reason to recommit to better habits.

In my contact with medical folks since diagnosis, I routinely ask about lifestyle habits that are recommended, and I'm shocked at the level of apathy in that area. Except for the Integrative Medicine folks, all the others indicate it doesn't matter what you eat and have nothing to say about other efforts. This makes no logical sense, except that our western medical world is so entirely dominated by pharmaceutical interests, that they seem to be oblivious to other factors. It can't possibly be that a disease that compromises the immune system is completely unaffected by living in a way that benefits the immune system.

I'm heading to NIH to be in a natural history study on June 20, and I am very interested in what they have to say about lifestyle changes. As they closely track my progress over years, I'm hoping to be someone who spends a surprisingly long time on W&W in spite of being unmutated. I plan to continue with my connection to Cleveland Clinic and to continue the healthy habits (including meditation, yoga, exercise, etc.). I'm not expecting to cure CLL, but to extend W&W for as long as possible. Given the costs and side effects of the medications, I am not at all eager to poison my body with powerful chemicals.

At a recent conference given by the Lymphoma and Leukemia Society, when asked about lifestyle recommendations, the presenting doctor said: "They don't research what isn't profitable, and if you can buy it in the grocery store it isn't going to be profitable." This is a pathetic reality, not serving patients... And it's then no wonder that there isn't "scientific evidence" supporting alternative approaches.

Thanks for posting. Lynn

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I wonder if these folks who got a spontaneous regression had any healthy lifestyle hacks -- unfortunately nothing of the sort is mentioned.

ash.confex.com/ash/2017/web...

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Cooking from scratch and twice daily brisk walks...

It might have triggered a regression... who knows.

~chris

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Who knows? Agreed. btw do you know about the "13q14 duplication" mentioned in that paper?

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No, not sure what they are referring to either... I have never heard that term before.

Some info in pediatric

rarediseases.info.nih.gov/d...

In my case I was FISH normal...

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Hi avzclac

(I repeat part of my message to Carla - above, in case you don't receive it)

I have been methodically using 'natural' healing methods for the last 5 years and my CLL has gone into a steady a healthy remission for nearly 4 years. My bloods and lymph glands are normal.

There is a difference between spontaneous remission (those who have done nothing to heal themselves) and 'intentional' remission (those that have followed a particular method).

There are many good methods, some having clear clinical testing that fall under the general category of 'natural'. It is a spiders web of information and opinions but worth exploring if it doesn't disturb your health. I continue research on them, finding pros, cons and reason why they may work.

Best wishes

Patrick

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Do you mind re writing what you have done?

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Dear Bchittineni and Niki2121

I continue to search for a simple explanation. Four years I remain CLL safe and continue researching. It clearly works. My general health and mood are improved.

What I do involves following clinically researched alternative methods. It requires being daily physically, emotionally, intellectually active in the treatment – i.e. changing my routines and attitudes. I am pleased to follow these new routines if it avoids side-effects of medical treatment, such as a damaged immune system, increased probability of affective disorders and the vulnerability of dependency upon a series of follow up chemotherapies when the first treatments fade.

1.Forced to say which part of my treatments is most important I would rest on the continued support of my wife. Social support is important.

2.Clinically named it includes daily 1hr practice of Tai Chi/Qigong (Chen K. 2002 or Chan, C. 2012 or e.g. Osypiuk, K., E. Thompson, P. Wayne,2018) also using Psychoneuroimmunology principles (e.g. Fagundes, Lindgren, Janice K Kiecolt-Glaser 2013 or Catherine Kerr 2002, 2011 or A.J. Cunningham 2001, 2014), having a ‘Sense of Coherence’ (e.g. Antonofsky1987 or M. Eriksson 2016 ).

3.Each of these requires reflection, integration of psychological-social- emotional connections and understanding. I see them as interdependent. It’s about finding the ‘gut meanings’.

4.Core is the Tai chi/Qigong (profound movements which are often underestimated). This is not only doing the particular postures/forms but focusing on the body- mind-feelings working together... Embodiment, grounding and centring. It is important you find a good teacher who is sympathetic.

5.I use anti-cancer diets (e.g. R. Beliveau 2006) health foods and have (minimal) herbal supplements – Turmeric, Green Tea and Vitamin D3 (e.g. Susan O’Brien, N. Kay 2011)

6.Also I follow the common sense of trusting myself, staying generally physically/emotionally healthy, keeping away from contagious possibilities, invasive, stressful situations and using the sensible advice given by most cancer charities, etc. It gives a sense of community.

7.Practice, culturalisation and integration make it all easier, even enjoyable.

This is said as simply as I can. I hope it’s helpful.

All this stuff (academically or on Google Scholar) is out there, it’s about applying it.

Please feedback your thoughts.

All the best

Patrick

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CLL society site has a lot of good info.

I know some one who delayed treatment many year on a raw food vegan low sugar diet. Very hard though.

she brought her number down from 150k to 50K over 6 months though.

High does green tea trial was done at Mayo clinic. I have written about it on Health unlock as well.

Look at all treatments not just FCR if possible,

Many doctors like doing FCR vs writing an Rx for a pill since they get to do the FCR....

That happen to me..

Be well

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Thank you very much Crystalsky for sharing your husband's experience with CLL and current attempt to manage it the natural way. I have been waiting since I joined this forum to hear from someone who attempting to do exactly what I am have been doing since I was diagnosed with SLL in March 2016. I will be following you and hopefully we can learn from each other and others can learn and share their challenges with the natural path. I agree in principle with your process and objective. My feeling is if the natural path can at least hold off any further progression of CLL/SLL and no treatment is necessary, it's a victory. If for some reason, it fails, then we know we gave it everything we had the natural way. All of you out there that are pursuing this path, please weigh in. I know we are a minority for various reason's, but we need to share our experiences. At this time I won't go into detail on my path and exactly what I'm doing. I will save it for the next response. I will tell you I have made many changes in my diet, and continue to exercise every day, and stay positive and enjoy life. I have guidance from a cancer dietician and use various reputable sources to guide me in decisions on what is best for my body. I have managed to stay healthy and still on W and W. There are people out there who beat cancer the natural way. Just ask Chris Wark (chris@chrisbeatcancer.com) or Glen Sabin who cured himself from CLL (wrote book n of 1). It can be done. Maybe not everyone, but until proven otherwise, I believe. Best wishes to you and husband on your journey. Keep us posted.

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There's absolutely no doubt that exercising is the cheapest, most effective change many of us can take to improve our health and most of us can improve our diet.

Please note however, that Chris Wark did not beat cancer the natural way. He had his colon cancer surgically removed. As one of the references below states "Mr. Wark is making a common mistake, namely confusing adjuvant chemotherapy with chemotherapy administered for curative intent.", then crediting his lifestyle changes to his cure. Adjuvant chemotherapy: medicinenet.com/script/main... is designed to mop up cancerous cells missed by the surgeon's knife and improve the odds of survival. We need to clearly understand what happened here and not continue dangerously misleading countless desperate people with cancer to follow only part of his treatment - the part that had the least effect on his cancer:

quackwatch.org/11Ind/wark.html

sciencebasedmedicine.org/ch...

I feel sorry for his surgeon, having his surgical skills totally ignored.

Unfortunately, we can't have our tumour burden surgically removed, which makes Chris's testimonial of less relevance to us...

Glenn Sabin credits taking EGCG for curing his CLL, but his journey to his cure took far more time than most of us are able to spare. There is plenty of information on what dose to take and the likely side effects in previous posts: healthunlocked.com/search/g... The problem is that there's an unquantified risk of clonal evolution (watch and wait is the recommended protocol for good reason), and the quality of green tea can be uncertain, due to the general lack of regulation of supplements. I've been taking a high dose for nearly 9 years and it hasn't cured my CLL, but at least my spleen and nodes haven't further enlarged...

Neil

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Hi Neil,

I appreciate your over sight of this forum and your responses to what is posted, people really are desparate (including my husband) he will read things about natural healing and want to go to extremes to fight this disease away, to the point where that it consumes him and ends in frustration when it's not gone come next testing times. My husband was dx'd cll/sll Dec of 2015 (was rear ended and after examination the rest is history) His WBC's have gone from 38,000 down to 10,000 in three months and lymphoctes had stayed around 75% after research and adding black tea and juicing. All of that gave him such great hope and I believe false expectations and has since given him more frustration and has him feeling more upset and down and thinking he's NOT doing enough "to cure himself". All other labs have been great, I'll add that he has no bad markers and that he has cancer in his lymph nodes in his neck, axillary, stomach and groin. A year and 8 months later we are still on w/w. But now his WBC's are at 51,000 and lymphocytes at 86%, all other labs are still normal and lymph node involement has stayed the same. All the time with out symptoms that his oncologist has told us to look out for, fever, night sweats. I said all of that to say that I agree with you, we are desparate to "just be cured" Of course I believe in living the best healthy life style we can, avoiding substances we now are harmful for us, eating well etc. but I also believe in modern medicine, as I am a health care worker. I found this group out of that desparation and in the very early days of his dx it gave us such a sense of community and hope and a sense of direction! Thank you for that!!

With his dx it has been a true roller coaster, I haven't been on here much, as we had been busy living life. We may need to face treatment here in a bit and that has us with mixed feelings. I think for us being faced with a new chapter after finally starting to learn to "live" with this dx it has us in a tail spin once again.

All in all, I just wanted to say thank you for being here and for taking the time to research and helping me to be realistic about this challenge in our life.

Avonne and Mark- California

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CLL is a tough blood cancer for even custom made drugs, so it's no surprise Mark is frustrated. It could still be many years before he needs treatment, however. Check out this pinned post and avail yourselves of one of the well renown Californian CLL specialists.

healthunlocked.com/cllsuppo...

Thanks for your appreciation.

Neil

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Hi CADreamer,

(I repeat part of my message to Carla - above, in case you don't receive it)

I have been methodically using 'natural' healing methods for the last 5 years and my CLL has gone into a steady a healthy remission for nearly 4 years. My bloods and lymph glands are normal.

There is a difference between spontaneous remission (those who have done nothing to heal themselves) and 'intentional' remission (those that have followed a particular method).

There are many good methods, some even having clear clinical testing that fall under the general category of 'natural'. It is a spiders web of information and opinions but worth exploring if it doesn't disturb your health. I continue research on them, finding pros, cons and reason why they may work.

Best wishes

in your explorations.

Patrick

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What can possibly be the harm in living with healthy habits? Except that perhaps we postpone or avoid the need to use outrageously expensive medication... so less profit is realized by drug companies? If any of the alternative approaches did the damage in side effects that the pharmaceuticals do, I imagine people wouldn't use them. I'll take meds if and when the time comes, but I'm willing to work hard to put that day off.

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Thank you also Carla for initiating the subject and sharing your partner's experience with attempts to manage CLL the natural way. I will be following you also. I know it takes a lot of adjustments and time to pursue the natural path, but I think it is well worth the effort. Best wishes to you and your partner.

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Thanks

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Dear Carla,

I have been methodically using 'natural' healing methods for the last 5 years and my CLL has gone into a steady a healthy remission for nearly 4 years. My bloods and lymph glands are normal.

There is a difference between spontaneous remission (those who have done nothing to heal themselves) and 'intentional' remission (those that have followed a particular method). There are many good methods, some having clear clinical testing that fall under the general category of 'natural'. It is a spiders web of information and opinions but worth exploring if it doesn't disturb your health. I continue research on them, finding pros, cons and reason why they may work.

What ever has worked for you partner should be continued. Keep contact with your doctor to check things are going steady and his health is maintained.

Good health and good luck, Patrick

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I would be interested in hearing more about how you got into remission Patrick.

We are at the beginning of our journey so trying to get as much info as possible. And thought what better than people who have actually done it.

Thanks

Carla

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Dear Woggysmith

Thanks for asking how....

It’s difficult to summarise it all in a few paragraphs as it includes many details- these required for researching and understanding its clinical and academic explanations. I have been trying to write it up for the last two years. Practice is much easier.

The key features include reducing stress, enhancing the immune system, nutrition, healthy living, exercises and an honest determination. It’s about being the least invasive and most positive you can be towards helping you function and live. There are various people who will criticise your choices with their selective facts, so it is important you feel comfortable with what you do and have a 'sense of coherence’* in your determination.

It includes a ‘cancer freeing’ healthy diet similar to the detailed one well described by Crystal Sky- who also stated her determination. My supplements include Green Tea/EGCG, Vitamin D and Turmeric - all taken at low quantities. Healthy living means generally good routines, exercises, staying away from negative situations/people.

I believe, and there is much supporting research, that a form of Tai Chi* has been crucial in addressing my CLL. Tai Chi, as part of Traditional Chinese Medicine and Qigong, offers another paradigm for health.* In Western terms it is a low impact comprehensive exercise which reduces stress and improves general health. It can be easily learned. Doing it sensitively increases ‘proprioception’: which means you slow down and deeply relax while being more integrated with balancing of your being.

It’s not as complicated as it sounds but needs regular routines and practice done with diligence and enthusiasm. You can use with all of the above to promote your health but without increasing worry and stress.

I hope this brief note is helpful. There are others within the CLLSA who have information on natural/non-invasive remedies.

It would be useful to bring all this together so we could have full discussions: as it is most importantly about our life and health.

You can find a route to health.

Best wishes

Patrick

*tai chi mdpi.com/2305-6320/4/1/2 & ncbi.nlm.nih.gov/pmc/articl...

* sense of coherence – Arron Antonovsky link.springer.com/chapter/1...

*Western medicine explains this through its sciences of psychoneuroimmunology, epigenetics and neuroplasticity.

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Thanks for that, much appreciated. I think we are on the right track but still have some changes to make.

All the best on your journey

Carla

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Hi Woggysmith. While I don't expect to heal myself using macrobiotics. I do personally believe that my dietary regimen,my martial arts protocol and lots of jogging have relieved many CLL symptoms and also possibly slowed disease progression somewhat. My platelets were falling like a led balloon every year for almost a decade and once I began the diet they leveled off and I am at 125. That's really why I started the diet at the recommendation of a doctor who had seen other patients do better with their platelets on this particular anti-inflammatory diet. Other benefits(at least I believe them to be) I had been terribly fatigued and within a few months of doing this diet,My fatigue disappeared. I had been getting cold sores,sinus infections and ear aches and since changing my diet-that has really improved. Haven't had a cold sore in seven months and I was getting them every couple of months. When I started the diet in January of 2016 at diagnosis, I had high cholesterol, high blood pressure,extremely high glucose and I was diagnosed at the same time of my CLL diagnosis with acid reflux disease. All of these drains on my health disappeared or went within normal ranges.My liver ALT count was 92 and went down to 28 within only months. I'd say that 90% of the allergies that I had since childhood simply vanished. Losing 45 lbs helped ,too. And the weight stays off almost effortlessly. I can't say beyond a scientific doubt that my regimens are slowing my disease's progression,but I can say that I see one of the foremost CLL experts in the USA and his exact words were,"This diet of yours has given you a new lease on life!" That said, I have a moderately aggressive version of CLL and my doctor informed me that It is a complex karyotype. The bottom-line my specialist says that he feels upon reviewing five years worth of blood values that I have probably had CLL since 2012. My ALC was 10.4 in January 2016 and at my last blood test a few weeks ago,it was 19.2. The doc says that my disease is behaving in an indolent manner and I'd like to believe that eating well and exercising have a lot to do with that. So keep up the good work and I bet that you'll see some great results Good luck.

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Thanks for sharing that and well done for making such a massive change in your health. Did you have a unhealthy diet before?

Carla

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Thanks for the "THAT ABOY!" Well, at the time I certainly didn't believe that my diet was unhealthy. But I ate meat twice a week, ice-cream almost every day,had sugary treats and cereals several times a day. Chicken, white flour baked goods,tons of oily fish,dairy was a staple,coffee,pizza and anything chocolate as often as I could get it. I always ate some veggies,but they were not not organic. If it hard nitrates,I was surely craving it. I was 45lbs overweight...so apparently my body wasn't exactly thrilled with the fuel I was so graciously providing. I never bought organic foods,I just really didn't think about that. I never ate brown rice,either. I never paid attention to what was I doing to my digestive system when i combined certain foods? Nor did I think about why it might be wise to evaluate what preservatives were in the foods that I ate or what chemicals might be in free range beef vs just the typical grocery store stuff. So I guess subjectively, I was eating a typical American diet, only I was really overdoing the sugar and the dairy. And I wasn't looking at nutrition as even possibly being a mode of healing or restoring health.....food at that time was simply fun to eat,because it tasted good. And it wasn't so much what I was eating ,as it was what foods could I have been eating that might have been more wholesome and kept me healthier. Being a snack food junkie didn't help either. That said....I don't have the right to pontificate--as there is this notion of FREE WILL and people are gonna do what makes them happy. But I am just presenting my thoughts and experiences. I will say that diet and exercise definitely have profound effects on our general health. And our general health may have some real effect on our immune system's ability to function well.

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Good Post here, Love the information.

There is 1 more ingredient not mentioned in these posts (Unless I skipped it)

Grape Seed extract, seems to benefit blood flow and keep blood healthy including (But never proven) cleaning dead cells.

I take 1 a day, its all hope, but hope is what keeps me positive.

I Don't Juice, however I do consume all these foods mentioned here, and cut all the "Bads"

Keep up the Hope and who knows ... WE may cure ourselves :)

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Hi there

Hope your partner is in good health.

My wife 44 was diagnosed with CLL an year ago. Her lymphocytes count is slowly rising.

Doctor says probably she wont need treatment for may be another 20-30 years.

But We are trying to cure it naturally.

I came across your post.

I juice carrots+beetroot twice a week. Intake of iron and vitamin D tabs regularly have maintained both levels.

Looks like it has slowed down the process but i don't see remission.

Can you please share if your partners CLL is reversed.

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Hi Dsingh

So since my last post my partners CLL has started to reverse. He is still going naturally but we have made a few changes after seeing a fantastic natropath.

Rather than eating just plant based he now includes fish in his diet and still obviously eats loads of plants and no processed foods etc.....but he was fading away and was in desperate need of some protein for his health. As fish is anti inflammatory that is what was suggested. He also takes loads of specialized supplements based on what his body was lacking. He no longer takes apricot seeds as we replaced them with Salvestrol Platinum as the seeds cancel out the Salvestrol if taken together. Since we started this we have had four bloods in a row that show his bloods are getting better by quite a bit. He has put on lots of weight and his lymph nodes are half the size now. He still is not cured but we are very hopeful and positive things are working out for him.

Good luck to you and your wife on your journey!

Cheers

Carla

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Thanks Carla for your reply.

What are lymphocytes count of your husband before and after sylvestrol.

I am not aware of sylvestrol.

Can you please share more about it where to buy and what potency and how much to consume.

We are in Australia and were in NZ before.

Thanks

D.S

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Silvesterol was looked at in CLL about 10 years ago, not sure it ever got into a clinical trial... you would need to research it.

ncbi.nlm.nih.gov/pmc/articl...

Here in Canada it was looked at recently, to see if it would overcome chemotherapy resistance in cancer cells, which it appears it may do...

mcgill.ca/newsroom/channels...

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I’m not sure what the lymphocytes were as the hematologists mainly look at the hemoglobin here. But I know those were 99 before and are currently 110. All the other bloods were better too that’s all I remember sorry.

Salvestrol Platinum is the name of it and you can get in online. We get it from our natropath here in NZ. Nath takes 3 per day.

Salvestrols basically are a natural enzyme found in fruit and vegies that prevent and kill cancer cells. These are limited in our fruit and vegies these days because of all the sprays we use and the changes we have made to them from cross breeding.

These are high potency and have been found to work great with blood cancers. So we thought we would give it a go and so far so good.

Nath has another appointment in a few weeks so will find out the lymphocytes history then and let you know.

Cheers

Carla

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Thanks Carla

Please keep sharing.

I have asked my electro homeopath too look into sylvestrol and let us know more so my wife can take it too.

And thanks again for sharing.

DS

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Hello, I am not sure I am doing this correctly but..... I was diagnosed 2 years ago with CLL, we are on the W&W trail, I am glad to be here and find some solace in reading other's posts on how they are coping/fighting/living with this. Thank you for being here and sharing your findings and such.

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