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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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.
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?
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.
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:
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:
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.
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?
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:
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?
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.
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.
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...
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
There's around a 1% spontaneous remission rate with CLL - which is considered an incurable cancer. Unfortunately spontaneous remission rates make observations about people "beating cancer naturally" next to meaningless. Without a large clinical trial, it is impossible to know why the cancer disappeared. Was it just a random occurrence or due to a specific approach?
The other issue with CLL - and part of why it is considered incurable, is that CLL actively suppresses our body's ability to eliminate cancer cells, which is why folks with CLL have a higher risk of secondary cancers:
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
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.
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 ...
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!
Yes, let's not forget that nearly all drug therapies are highly toxic and can be lethal so it's not surprising that a natural substance could also have toxic properties depending on amount, situation etc. So, it's always important to contextual the treatment and the first thing to be contextualized must the the individual him/herself. There is the old adage, "if it doesn't kill you it will make you stronger" which I think has a particle of truth in it. (Parenthetically, which is why this is in parenths: They're even saying kids have to go back to playing on the earth, with dirt etc because they are not developing the immunity that they would receive from this kind of contact. I can say that this is consistent with my experience and my wife who is from Brazil. Similar idea is the recent removal of certain hand-sanitizers etc. from the market. We NEED bacteria, at least some or most. And on and on.)
Your post is encouraging- My father was diagnosed with CLL and he is turning 80- his spleen is enlarged- he is exhausted-I want to help him with his diet ( which is not horrible) will you share your juicing recipes with me. Thank you so much
I would appreciate your recipe for my husband. He has been taking Imbruvica (ibrutinib) for 5 mos now. His wbc has dropped from 281,000 to 54,000. Thank you so much!
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?
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
Hey there! I just joined this group - have had CLL for 4+ years, W&W but have become increasingly interested in everything I can do to help myself. Just curious how you are doing with your protocol which is very similar to mine.
here's my situation, fyi - I haven't had any negative symptoms except for 1. several sinus infections/ year, the last of which really knocked me out - took me 3 months to really get my energy back. 2. I recently lost my upper vocal register because of lower tonsils are swollen (been about 4-5 weeks now) but my lymph nodes all went down a lot (I used hot/cold water treatment mostly, directed towards the nodes.)
So, after going to a naturopath and doing a lot of reading and watching videos, I am pretty much doing all the things you're doing although I'm not vegetarian. I do consume an increasingly plant-based diet, pretty much no cheese. Using herbs, green tea, turmeric, garlic, etc. I'm feeling great actually but my lymphocytes stay above normal (70+ range) and my white blood cells increased in the past 3 months about 75%, recently to 26.5.
I am so happy for you and your husband!!! And I'm also very grateful that you shared all this - I am pretty much in the exact same protocol as you for probably the same reasons that you have chosen this approach. (I'm CLL W&W since 2015 but am no longer "waiting" for the other shoe to fall.) Anyway, I'm about one month into cold-press juicing (I too used to think it was too much of a pain) as well. That, in combination with Vitamin C (high dose Ascorbic Acid) and some other basic supplements and green powders, lemon juice, turmeric, garlic, has already shown me the incredible benefits of this approach - I knocked out one cold already and this morning the protocol is doing wonders on a sure-fire sinus infection that tried to take over. I'm very hopeful. Another example of improvement related to the juicing and Vitamin C, in my opinion, is an improvement in my lower tonsil swelling which caused me to lose all my upper vocal register. My range has increased about 40-50% back to normal, again after just a month of this protocol. I still have a ways to go but I'm optimistic. Everything you said about lymph nodes shrinking confirms what all the Alternative community seems to be saying about cancer. Again, thank you so much and wishing continued improvement for your husband
Hi, I appreciated your post. I too have CLL with splenomegaly My spleen is currently about 17cm. Just curious, when you make smoothies are you using fruits like pineapple or dates or do you use just berries? I am very concerned about the size of my spleen. I am now drinking dandelion tea every day also,
No, we aren't making smoothies. That's different. We juice with a juicer to extract all the nutrients, and my husband drinks a tall glass twice a day. If he was retired, I have him drinking more, but taking it to work is not really doable.
Organic berries are highly nutritious, but not suitable for a juicer we've found. If you'd like our juicing recipe I can send it to you via private message - so just let me know. I just bought a new juicer by Breville, and we love it. It does a great job extracting all the goodness from the veggies.
Also, we don't just depend on juicing for keeping things controlled. My husband also takes a range of supplements, which so far are doing the job of keeping his CLL quiet since having to stop Ibrutinib due to it most likely contributing his heart attack.
Happy to share. Just let me know, and I will PM you.
My name is Jim and also have an enlarged spleen do to cll.
I've been juicing with carrots beets celery and apple every day 4 times a day. May I ask what do you juice? Can you send me a Private Message (phone number removed by Admin)
You have replied to a 2 year old post and some members are no longer active. It's great that you are trying to help your husband improve his nutrient intake, but be aware while juicing can be an effective way to address this, there are also downsides to juicing:
Have you looked at ways you can increase your husband's intake of raw fruit and vegetables (adequate neutrophil count permitting), where he also gets the benefits juicing removes?
Neil, I would love to see your information against juicing?! That is absurd. There is nothing, I repeat nothing, bad about consuming things from the earth that have healing properties. Really disappointing the misinformation you are attempting
to spread to people who are seeking to restore their bodies to perfect health.
If you follow the links to the article by a professional nutritionist from my post referenced above, you'll find this: healthunlocked.com/wecudos/...
Processed juice is NOT found in nature, the processing is done by expensive, manufacturered juicers.
Per the nutritionist's article, we shortcut natural bodily processes to our possible detriment with juicing. However, juicing may have value in specific circumstances.
So then it comes down to whether you need the additional nutrients and if so, do you need to reduce your calorie intake from eating meals or risk gaining weight. Which brings you back to the quandary of missing out on the exercise from eating and having your body process the food, along with missing out on valuable fibre.
No doubt juicing can be useful if you have been unwell, have lost weight and don't have much of an appetite and it can add to the range of fruits and vegetables in our diet and hence provide minerals, vitamins and additional nutrition we may not otherwise obtain. All things in moderation.
I've not gained any weight. This isn't like orange juice you buy in the store. I think you just may not understand because you don't juice, and therefore, can not attest to the benefits gleaned from it. For me, it's energizing and I see the benefits in my skin, hair and nails, and remaining free from illness such as colds or the flu. I'm certainly not going to claim it cures cancer though.
As a new member it's disappointing to see you allege that anyone is attempting to spread misinformation here. We try to keep this site factual and with peer reviewed references wherever possible although members are welcome to share their personal experiences.
I apologize if I came on too strong. My dad has CLL and has taken a natural route of healing, and I've done such extensive research I thought I could help others in this.
I do have nothing about juicing, however in a "good nutrition" angle, I would say that juicing process will take out the fiber of everything I put in the juicer.
Fibers are essentials, so why not eat an orange instead of juicing it? Would I ever eat 3 orange in a row? The answers is no... however, how many oranges intake I have in my glass of juice? 3?... 4?
Personally, I'll drink juice if I want it, if I like it but not for supposed healing proprieties. Because I sure know that there are some studies about this fruit, this vegetable that can "heal" things. However, each time it was a deception... I sould have eaten a garbage truck full of this fruit, or this vegetable to benefit of any "healing propriety" and in my opinion, it's not realistic.
PowerWithin11 says: "There is nothing, I repeat nothing, bad about consuming things from the earth that have healing properties."
LOL! As long as those "healing properties" actually pertain appropriately to what you are trying to heal.
Its like the Turkey tail mushroom that has been discussed here numerous times which can be great for inhibiting certain tumor based cancers, but propels/worsens mutated B-cell growth.
Or foods and supplements that affect CYP3A inhibitors/inducers and substrates and can wreck havoc on cancer treatments whether pharmaceutical or "natural" e.g. grapefruit juice.
etc etc.
Just because it is natural or comes from the earth does not mean it is benign in all specific cases of a particular disease.
To be fair, PowerWithin said that there was "nothing bad about consuming things from the earth that have healing properties".
As you pointed out above, it's the processing to make juice that encourages over consumption and the reduction in fibre that are concerning, plus we miss out on the benefits of chewing and digesting the fruit and vegetables.
What we need to remember is that "All things are poisons, for there is nothing without poisonous qualities. It is only the dose which makes a thing poison". - Paracelsus
Quite a few of what you have listed have active ingredients that have medicinal uses, in carefully controlled amounts!
Digitalis from foxgloves is an excellent case in point, illustrating the difficulty of getting the right dose and how new medications are safer and life extending. The gap between natural substances that have an effect on CLL and modern drugs is far more marked. See:
Sagarcanada, I think you are misreading the post. The juicing is only 1 component. IMO the key takeaway from this is that they removed the toxins from their environment, and made dietary changes that worked for them. I have done this, and I am one of those not expected to respond to treatment due to my markers & disease aggressiveness. I have air & water filters, air sanitizers, I use natural skin care, I eat organic/natural/grassfed. I had to play around with foods to find what optimizes my health, and still modify as my Hb, platelet, and neutrophils change. Whatever works best from a dietary standpoint is highly individual! Juicing is a way to get certain concentrated nutrients, but remember you are losing the fiber doing this. It may be great for some people, others won't do as well.
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.
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.
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
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.
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.
Hey everyone into juicing! Do you all know about cold-press juicers? I just got mine 2 weeks ago - it's an OMEGA, horizontal juicer. No heat or oxygen added so the juice stays fresh in the fridge for 2-3 days. (I haven't tried going longer because it doesn't last!) Anyway, after two weeks, plus some basic detoxing recipes (garlic, lemon, olive oil in the morning), I feel I'm really on a great path. I put everything into it, btw - 99% organic. It's fast and easy to clean. Mine cost around $350 but OMEGA makes them as low as $240 or so. Mine has the bigger opening which is helpful. Also started making my own almond milk with the juicer too. No more guar gum, carrageenan and whatever-filled cartons of mostly water with thickeners!
I don't use recipes - I find the best, freshest, local (if possible) organic produce I can get my hands on. As others have said, drink the rainbow. Beats are considered in the alt community for their blood-healing effects. Carrots, VIT A, leafy greens, cruciferous vegetables (broccoli, cauliflower, Brussels sprouts) and asparagus are all considered super foods. I add an apple for taste and sweetness. Then try sprouts - I started making them myself. If you juice like this 2x/day for 3 days you will notice an improvement in complexion. And your skin is just a reflection of what's on the inner "skins" of your body (gut etc). The cold press juicer is great because you can make one bunch in the morning that can easily last 2 days. ours lasts about 1 because my wife also shares in my production.
Started sprouting as well! Congrats. I'm doing broccoli seeds - they are supposed to be among the most nutritious foods available. So easy and empowering too
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.
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.
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.
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!
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!
And, speaking from my own experience over the past month, I wouldn't underestminate the concentrated power/nutrition of juicing. I bought an OMEGA with a larger mouth for about $350 - best investment I ever made.
Completely agree. We've been juicing for almost a year and a half, and my husband and I won't miss a day. I think my body craves that glass of concentrated nutrition.
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!
Just a few questions: When does the process of slowing down a chronic illness to the point that it allows an excellent quality of life and even a long life become a cure? Where is the dividing line? And why wouldn't the same mechanisms that "slow" down a disease, not be able, under the right circumstances (cellular environment) be able to cure or eliminate the "dis-ease"?
Surely a cure is when you no longer need to continue doing anything specific to maintain your health? In other words, your body is able to maintain homeostasis unaided: rxlist.com/script/main/art....
Until you reach that point, you are just managing a chronic health condition.
There's a specific medical definition of remission from CLL, per the iWCLL Guidelines. See section 5 and take key 4 of this document: bloodjournal.org/content/bl...
It is possible to undergo spontaneous remission and there's a natural rate of about 1% which makes it difficult to know when alternative treatments have truly contributed. A spontaneous remission doesn't necessarily mean that you are free of CLL, i.e. cured, but if your body is able to maintain homeostasis and prevent CLL from affecting your quality of life, then surely the difference is negligible. See this post and the included references:
Your reply is much appreciated. Of course, me thinks that there might be a continuum between "no longer needing to do anything" and doing "a lot" in order to maintain our homeostasis, if such a thing actually exists apart from some kind of definition. Put another way, aren't we always doing "something" whether we can agree to call it "anything"? That actually brings up the underlying issue to me on why the alternative approaches make so much sense and can be so effective according to the testimonies I've seen: They all assume that the body is always doing nearly everything it can to get better, to heal; we just need to give it a chance. If we contemplate the billions of things our bodies are doing "right" instead of the one or two things it's doing wrong we would see ourselves and the world in a whole new way. We would appreciate the incredible power within us that is the source of any healing, whether the conventional or holistic. But that's why the wisest mystical teacher I am aware of (G. I. Gurdjieff) said that human beings always see things "upside down." We just don't see what's right in front of us.
Homeostasis definitely exists and covers a vast range of feedback processes that maintain optimal body health without our awareness. You obviously enjoy reading, so perhaps you'll exploring more of how our bodies do this. Understand why testimonials are a very poor way of determining what works:
healthunlocked.com/cllsuppo.... That leads into why we need statistical science behind clinical trials to tease out which treatments are effective and differentiate any observed changes from Regression to the Mean. See the Medicine section in the explanation here: rationalwiki.org/wiki/Regre...
Why can't our body heal from disease? If given the right tools to do so. The problem with conventional medicine is it relies on chemicals to treat disease, rather than supporting our body's natural ability to heal. Chemicals are not recognized by the body because they aren't natural, hence all the many side effects pharmaceuticals bring.
There is a place for pharmaceuticals, like in emergency medicine, critical care, etc. But, treating chronic conditions with pharmaceutical drugs simply makes the body dependent on them, and where's the cure? They aren't designed to cure, they are designed to treat indefinitely.
This is how I see medicine. It's my opinion, and it doesn't need a debate, or someone harassing me for having an opinion.
I couldn't agree more. In my experience, any serious compromise of the fundamentals - sufficient sleep, good (clean) food/water, emotional well-being, leads to illness. It's so clear. The few serious illnesses I've had in my life came from extended periods of stress or emotional pain, lack of sleep and lack of self-care (clean food/good diet/little sugar). And I've been able to cure nearly all of them through "natural" methods. But it did take years because that's a journey that takes a lot of experimentation and observation and study.
To be perfectly honest, I think my CLL comes from my own past negative emotional states. So a big part of my effort to heal this "dis-ease" (besides diet etc.) is through mindfulness and various other mental and spiritual approaches, including for ex. meditation, yoga and NLP or self-hypnosis. This is my truth and I only share it with the hope that it might be helpful for someone else on a similar path as mine.
And I agree also on the point of conventional medicine when needed. Thoracic surgery saved my life. Don't need to say any more than that I hope
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.
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.
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.
I live in Buffalo, NY, but my son lives in Cleveland on the west side of the city. I'm planning to visit him in late November for his birthday and would be happy to meet for coffee or whatever. I'm part of a monthly CLL Society support group in Rochester, NY, and must say that I find it therapeutic to communicate with folks who also have CLL.
How about yoga ya'll? I started in July, 3-4 times a week. It feels to me like I'm bringing consciousness (energy/light/release) to parts of my body that need it and every session shows me a new area that needs this attention. I had done yoga 20 years ago regularly, then stopped and did other spiritual practices but now I'm really happy and feeling a lot of benefit from the practice. Anybody have any experience with yoga and health, and specifically CLL (I'm 4+ years W&W - but not waiting passively anymore!)
I love the yoga and feel that it helps me to feel calm and more physically flexible. I wish I was more disciplined about doing it on my own, but I do best when I attend class with an instructor. I go Mondays for 1-1/2 hours and it's wonderful. Are you familiar with Glenn Sabin? He writes about patients taking an active role in their own health... I like his stuff. Just got his book, "N of One" but haven't read it yet.
The name is familiar but I haven't read the book. Thanks for the tip! Like you, I'm at the stage of still needing a class so I go at least 3X a week. When I did it earlier in my life I did have an in-home regularly practice. Eventually I expect to augment my classes with an in-home routine of some kind. The one thing I do is try to stretch my toes/ankles often which brings me some energy and helps me to avoid cramping in the feet.
(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.
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.
I really like your answer, Patrick, and find it comforting to read about someone's reasonable application of sensible actions. I am also hoping to delay treatment and maintain W&W with good eating and stress relieving efforts (meditation and yoga now). You make me curious about Tai Chi. Is there any suggestion you have about what to look for or avoid in seeking training? There is a Tai Chi studio not far from where I live.
Wow Patrick. We're kindred spirits, judging from your approach and attitude to your CLL. At the same time you mention a whole area that I had not really delved into: psychoneuroimmunology. That sounds to me pretty much like what I feel is at that core of all our dis-eases. So I will keep that on that the table for further exploration. btw - Are you familiar with Ty & Charlene Bollinger's website and documentaries: The Truth About Cancer: A Global Quest. They cover a lot of alternate treatments and more importantly, modalities. Several of the people in the series speak of the spiritual/emotional component and most of the people in the doc are MD's and cancer survivors. I suspect that psycho-neural and spiritual are just different models which touch on the deeper dimensions of our ourselves, which inevitably includes our disease/illness & wellness.
Just be aware this post from phenry is a year old and he wouldn’t appear to have posted on the site for over 9 months so may no longer be an active member.
I continue to be CLC free and generally very well for an aging man. I still believe that this method(s) works and research it daily. There are further important details regarding perspective, attitude and routines. I will write you more.
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.
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:
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...
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.
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.
Hi, Thanks for sharing! I'm CLL since 2015 as well and W&W but very proactive in diet and lifestyle so doing everything I can to avoid drugs etc. My WBC just jumped to 26.5K from 15 in a a few months so concerned. My ACL are 76%. Anyway, I see from other sites that many people are happy with the drugs my hemotogologist has said we should have a conversation about: Ibrutiniv and Venetoclax. Again, I want to avoid all drugs if possible but I want to be open to whatever I might need to stay healthy.
(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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
For those looking for more "evidence based" studies on supplements. Here is a link to a reputable journal on the benefits of supplements and diet for one 56 year old woman with CLL.
Basically, she followed the anti inflammatory diet and added K2, D3, E, a high potency B vitamin complex, DHEA, Green Tea Extract, Curcumin, N-Acetu; Custeome amd Milk Thistle. You can see the exact amounts she took in the article. (there are some people on this site that like to discourage anything other than what is prescribed by mainstream doctors but I think it is worthwhile to look into wholistic treatments and supplements}
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