Natural only for me.

[CLLnaturally]

I'm very interested to hear what kinds of results folks have gotten from clean organic eating and juicing. Our Drs tell us there's nothing we can do to improve our fatigue, nor to bring down our WBC. I choose not to believe I am completely helpless. I am a woman of faith, courage, compassion and wisdom. I will continue to do my best to beat CLL, the seeking spirit never gives up.

[Cllcanada Top Poster CURE Hero]

Exercise had the biggest impact on my CLL, twice daily walking for about 40 minutes.

Diet I believe has far less of an impact on CLL than exercise... cook from scratch and get your B12, folate and VitD3 counts looked at by your GP... etc.

Here is a wonderful compilation of ideas,

healthunlocked.com/cllsuppo...

~chris

[cajunjeff]

My doctor didn’t tell me there was nothing I could do to bring down my wbc. He prescribed ibrutinib for me, a proven drug and, for me, a miracle of modern science.

Insofar as natural remedies he counseled me to eat healthy and wisely as I have an illness that compromises my immune system and the more healthy I am to help my immune system, the better. He told me to be wary of claims that my Cll can be treated with supplements.

I think having a positive mind helps, but that I cannot will my Cll away nor can I keep it under control with unproven natural remedies.

That’s the plan I am on and I am happy to report it’s working so far. I do think compassion, wisdom, faith and courage are good qualities to have in fighting our Cll. But without ibrutinib or some other proven drug, I think I would be quite ill now.

I also think organic foods and certain juices are beneficial to our health. I am from South Louisiana though, and completely unable to give up my gumbos, etoufees, jamabalayas and Abita beer. Good luck to you, your positive attitude is an asset for sure.

[Newchallnge]

I agree with Bassejm below. I did much reasearch and asked my two specialist and there is simply no definitive data that shows a correlation/direct outcome. With that said, it can only help create a healthier wellbeing and strengthen your immune system to be able to weather what ever comes. I’m trying my best to eat better, exercise more, be more social and not worry as much. I don’t know if it will cure me but it surely can’t hurt!

Also, the may clinic is doing a study on greeen tree extracts. Let’s see!

[Cllcanada Top Poster CURE Hero in reply to Newchallnge]

Is this a new study of EGCG in green tea... or the 2004 study and subsequent Phase 1 and 2 clincal trials in CLL?

~chris

[Eric_68]

Our own immune system is the best defense against anything and everything.

Therefore by keeping your system as healthy as possible and strong with a Good diet full of all the Vitamins and Nutrients the body needs and regular exercise is Always going to improve your life no matter what condition you are in.

Our body naturally fights and kills bad cells, so help your system. Lots of Fresh greens, Raw Veggies, Juicing are ways of boosting your system.

Fasting is also a good way of killing off, Old and Bad cells if are disciplined enough to fast.

We also seem to leave out with these discussions lean Red Meat, this has its ups and downs with all kids of different research out there, CLL will (over time) affect your Iron levels, I always make sure I have 1 day a week were good lean red meat is on the menu.

[Cllcanada Top Poster CURE Hero in reply to Eric_68]

Unfortunately our immune systems are compromised and don't work as they should... its genetically damaged B cells, that won't die when instructed too...and they invade the nodes, spleen and bone marrow, blood and further reduce immune response and the production of other cells.

Keeping healthy though diet, exercise and stress reduction, are a good start point, for certain...

Get an annual work-up, thyroid test, annual dermatology exam, annual FOBT test, and colonoscopy when required, bi-annual ophthalmology exam, regular dental checks.. all will help too.

Something happens like a rapidly expanding node, get in to you CLL haematologist... also finding a CLL specialist doctor for a second opinion, might be a good idea if your prognostic markets are poor.

Here an excellent guide for patients and family members...certainly worth reading and downloading to your device... its a .pdf file, accurate and up-to-date.

nccn.org/patients/guideline...

~chris

[Big_Dee in reply to Eric_68]

I walk 2-3 miles a day and try to eat 65 grams of protein a day. I feel the protein has stabilized my red blood count and even raised it a little bit. I think the exercise gives your body a call to increase red blood cell production. I take some supplements but do so with doctor's advice. I try not to believe the latest fad diet, what works to reduce weight and etc may not help but actually harm your body. My doctor suggested drinking green tea. As CLLcanada has said many times before you can not drink enough green tea to duplicate the Mayo Clinic trial results. I have drank coffee since I was twenty one, but actually enjoy a cup green tea with honey to start my day. I have also noticed that it helps settle my stomach when not feeling well.

[Lynnibeth]

After I had been eating about 90% organic, very little meat and then only grassfed for 4 months my counts came down about 1/2 and my nodes have also went down in size. I quit eating sweets. I also get a fair amount of exercise which just makes me feel better. I can't say for sure that the diet helped but I do feel like it has helped me feel better and less tired. I do drink green tea daily but don't do any other supplements other than black raspberry powder in my smoothies or morning oats.

[bbaac5 in reply to Lynnibeth]

My husband is doing the same as Lynnibeth and he has had the same experience with his nodes and numbers! We feel big pharma will never give us the cure... too much money involved, so we will do what we can to postpone the drugs.

[Eric_68]

on 1 side, CLL sounds like a chronic condition that we can go on living with, with the high possibility of never being treated 80%

on the other side it feels like we will deteriorate and we are doomed

[Cllcanada Top Poster CURE Hero in reply to Eric_68]

80%? Perhaps that's a typo?

The usual figure often cited is 30% and those patients tend to be in the 70+ age group...

~chris

[Newchallnge in reply to Cllcanada]

I understand it to be around 30% as well but for people like myself who are around 50, we have a longer run so statistically we will probably need treatment. I think the data supporting the 30% is based on avg age around 65-70 so there are less years of life expectancy so they may pass away due to other factors and never need treatment. That’s how I understand it but I am not a doctor!

[AussieNeil Partner Administrator]

Don't overlook exercise. It's totally natural and we've done so much over the past century to eliminate it from our lives to our detriment. I've certainly found it helped my fatigue, provided I had enough energy to go for a walk: healthunlocked.com/cllsuppo...

As Eric_68 says "keeping your system as healthy as possible and strong with a Good diet full of all the Vitamins and Nutrients the body needs and regular exercise is Always going to improve your life no matter what condition you are in." However we do need to appreciate that we do have what's recognised as an incurable cancer - even with the best targeted treatments available. So it's realistic to expect that improving our health through improving our nutrition and fitness is likely to give us a better quality of life and perhaps extend the time until we need treatment, but treatment may still eventually be needed.

Juicing is not the natural way to obtain nutrients and vitamins, so we need to be careful to ensure we benefit from juicing without losing the benefits of obtaining them in the usual manner : healthunlocked.com/cllsuppo...

Did you read about the recently published study which compared the health risk of developing cancer on organic vs non-organic food diets?

healthunlocked.com/cllsuppo... It doesn't address your question of whether organic food consumption can help us once we have a cancer diagnosis, but it does give an indication of the possible degree of risk reduction from eating organic food and highlights the need for further studies.

Neil

[Eric_68 in reply to AussieNeil]

Agree, raw Veggies and Roots (Ginger, Beets)

I would never juice Fruit as all that does is throw away all the good fruits give you leave you with the Sugars.

If you love juicing, do it with some understanding on what you are extracting vs throwing away

[crystalsky]

My husband is remaining stable through an organic, plant based diet, juicing, exercise, and supplements, after having a heart attack after six months on Ibrutinib. What we eat does have a huge impact on our health. If you don't believe it, just eat McDonald's everyday and see how healthy you will become.

[Nick2121]

Juicing fruits and vegetables for me has gotten me off metformin and lowered my cholesterol. My cholesterol was really high well past the need for medication. My doctor was primarily concerned with my type 2 diabetes.

My juicing of simply carrots and apples for just 60 days got me off metformin and got all cholesterol levels normal. Theirs no pill that can do that.

I've always juiced to replace meals and ate regularly for lunch and dinner. I've never did a juice fast .

It remains to be seen if juicing can have an impact on my wbc count. My goal is to manage it to the point of never needing treatment. The way I'm currently managing not needing medications for type 2 diabetes, cholesterol and hypertension.

I certainly need more baselines with future blood work..... but my wbc and alc went down in last blood work and a bunch of counts went up that we would want to be up.

Wbc 17.5/16.2

Alc 12.3/11.3

Forks over knives on Netflix is a good thing to watch

Nick

[AussieNeil Partner Administrator in reply to Nick2121]

Nick, it's great to hear of how you have reduced your cholesterol, but as you appreciate, you need more blood test results to see any trend in your ALC. A variation of 1.0 between tests is well within the normal variation seen from test to test, and even possible when retesting the same blood sample.

See : healthunlocked.com/cllsuppo...

Neil

[Mijoed]

I really can't draw a direct correlation between blood counts and exercise and diet.

However....

There is certainly a "feel good" factor after exercising and I think that, by keeping active, fatigue starts from a different (better) level.

Diet starts with the type of foods eaten, and my normal diet is good. I certainly feel worse after eating too much junk food. We buy mainly organic to reduce the amount of unecessary contaminants.

Juicing is not something that appeals to me. It removes a lot of the fibre and, in the case of fruit, gives a big sugar kick which you wouldn't get from eating the whole fruit. Additionally, you can consume a lot more calories so portion control is essential. Blending, on the other hand, still keeps all of the fruit and possibly leaves you feeling fuller. My choice is to eat the original vegetable or fruit.

W&W for 11 years now, briefly labled stage 3 but an unplanned splenectomy has me back at stage 0 with very stable and only slightly abnormal blood counts.

Mike

[thompsonellen]

When first diagnosed, I got into the best shape of my life. Lost 25 lbs. Was eating nearly perfectly. Cut out most alcohol. Was always athletic. I still ended up in the hospital with hemoglobin at 5.5 in kidney failure within 5 months and was in treatment a short time later. I don't think we should give up, and I respect everyone's freedom to choose, but I would be literally dead if it weren't for non natural remedies.

[Hoffy]

Take a look at my posts. I personally know someone who brought their white count down from 150,000 to 50,000 on a low sugar raw vegan diet with a lot of wheat grass too. That is a hard diet I am just vegan and drink a lot of green tea and juice Tumeric.

Be well,

Hoffy

[AussieNeil Partner Administrator in reply to Hoffy]

Do you know how much weight the person you know lost on that presumably calorie restricted diet? Did they experience any reduction in node or spleen size? With such limited information, it's difficult for others to assess the relevancy of the experience of the person you know to their situation, even with the N of one factor. If they were considerably overweight, it's possible that reduced inflammation from weight loss may have been a key factor in why their white count down. Chris Cllcanada has reported a similar reduction from weight loss.

Neil

[Cllcanada Top Poster CURE Hero in reply to Hoffy]

I cooked from scratch and tried to maintain a low GI diet, but exercise was the key for me... dropped 120 lb over18 months, and reversed my absolute lymphocyte count [ALC] from 136K to 42K

I don't think diet plays a big role in CLL management, frankly...

~chris

[Eric_68 in reply to Cllcanada]

that's 54Kg ... wow, do you get dizzy or weak?

I watch my diet and cook everything, but if I loose too much weight I get really weak.

I dropped 10 kg and I'm maintaining now as I hate that weak feeling

[Lola69 in reply to Cllcanada]

What is a low GI diet? Gastro intestinal?

[Eric_68 in reply to Lola69]

Low glycemic index (GI): Green vegetables, most fruits, raw carrots, kidney beans, chickpeas, lentils and bran breakfast cereals

You should have learnt that in school OOOP!! hope no-one get offended.

[Lola69 in reply to Eric_68]

I did not go to dietician school! Went to nursing school. My specialty is psychiatry and post op dressings Maybe we ran through it can’t remember

[Eric_68 in reply to Lola69]

Ahh Lola ... you missed my point on the "GI" Acronym ...

[Lola69 in reply to Eric_68]

Did not miss your point I am a very observant human. Ok so low glycemic diet would mean I can’t have Sicilian cannoli? What about mille feuille? See I remember in other words low fat diet? Feel free to correct me we give that diet to diabetics. Remember I am living in a French province

[MsLockYourPosts Passed Volunteer]

In school (elementary) we taught about the food pyramid and healthy eating, but not the terminology. Interestingly, as doctors who study the effects of different foods on health have learned more, the food pyramid used has changed.

We need to remember that the way we answer questions here may not offend the individual we are responding to, but it may leave someone else assuming that their question is "dumb" and stop them from asking something important. The only dumb question here is the one you wanted to ask, but didn't. Thank you, Lola for asking the question. I'm sure lots of us benefited from having the abbreviation written out for us.

[Lola69 in reply to MsLockYourPosts]

You are welcome Ms! I grew up learning that there r no dumb questions! few years back I would use the acronym Tx or Dx and a few did not know what it meant. then there is PRN , HS , BID, PO >> LIST IS LONG .. oh wait those are medical terms 😁

[Suzivida]

I so believe in plant medicine, the power of plants is amazing. I am vegan, mainly raw, lots of fruit and veg, organic of course. I have so much energy even now in the winter when I am usually lethargic, I know it`s early days for me, but I was told by my consultant that after the first time of treatment, it would come back quicker the second time. They wanted to put me on ibrutinib the second time, which I refused, I want to keep my immune system strong without too many drugs. I have lots of green smoothies, raw juices, salads. vegetables, fruit. I make everything from scratch and eat no processed foods, to be honest I am loving it and the difference in my body/mind/spirit is so amazing.

I also walk, garden, play with my Arabs, rebound and do yoga and continue to run my business......................

[Hoffy]

Also, the book n of 1 is good.

Hoffy