I am confused on what we can post on this site.

[hmo1]

I feel bad for all people with Cll Leukemia. I sometimes posted things that were natural should we just never post anything like that. When I see someone post something that is natural it makes me feel better that maybe one of us will be healed from God naturally. I feel really bad after someone tells you that they do not like what you posted. I think everyone here does not want to hurt anyone on this site. If one of us does get healed naturally will we be able to tell everyone on this site or should it be kept quite. Thank you. I love all of you.

[JR1964]

As for myself , I like to see what everyone is doing. Just per chance, it may be something to improve the quality of my life-if it is within reason. And who knows, maybe a cure from somthing natural. There is a rumor and I also read it somewhere. Do not know if it was here or on another site that a patient of my doctor( Dr. Weirda) went into remission without the use of any drugs- all natural. Was it from natural healing or this 1 percent I hear of that get healed through spontaneous remission. Will have to ask him at my next appointment. Keep the faith. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.

[hmo1 in reply to JR1964]

Thank you so much.

[Sushibruno in reply to JR1964]

1 percent? That's extreamly low😢😢😢

[JR1964 in reply to Sushibruno]

No worries, there are numerous amount of treatments with many more to come and one day the term CLL will be in same sentence with CURED. You also may be in the group that never need treatment. Or treated one time and done- considered cure after a certain amount of time. Have faith. Stay Positive. Live Life. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.💪💪💪

[Sushibruno in reply to JR1964]

Your words mean so so much to me.thank you for caring you're super amazing!☺

[CLLCalifornia-USA in reply to JR1964]

Love your always positive attitude. Thanks. Sally

[Eric_68]

I like seeing Natural and Diet posts, its all good.

The way I see it, and I'm no Doctor just "Guessing"

Our body will produce deformed cells "Cancer Cell" and our body will naturally fight it.

If you come to a balance (The amount of bad cells your body fights is equal to or more that the number of bad cells our body produces) , well that will look like remission,

However our body is still producing the cancer cells

If we can keep this in check with diet, Damn ... why not lets do it and keep it at bay.

The time will come when we will beat this, I'm praying for a cure.

[hmo1 in reply to Eric_68]

Thank you, I agree.

[Sushibruno in reply to Eric_68]

I AM PRAYING WITH U, I DON'T LIKE THAT IT'S IN ME AND NO BODY WANTS THIS.

[KL2018 in reply to Sushibruno]

I have said almost those exact same words!

[Spacee]

I agree with you hmo1!! Perhaps the tone a person tells of an experience whether it be God, diet, supplements, is a key. Sharing what helped a person but not thinking that everyone should do the same.

If a person went to an Eskimo hut and sat in it for 3 weeks and was healed, I would love to hear about it! Doesn’t mean my hubby will be interested in doing it!

Linda

[hmo1 in reply to Spacee]

Thank you.

[AussieNeil Administrator]

Our community volunteers and admins endeavor to maintain evidence based sharing of information in this community and also encourage members to share their personal experiences. In our community guidelines: cllsupport.org.uk/cll-suppo... we specifically ask members to not promote

alternative medicine, because in nearly all cases, if it worked then it would just be medicine!

You specifically ask about natural treatment, but natural doesn't necessarily mean safe. We have (generally) done so well establishing safe living standards in the developed world, that we have forgotten how dangerous it was to live in the natural environment. We have lost sight of the fact that what we eat and drink can be deadly if not for thoughtfully developed legislation that (generally) ensures what we eat and drink is safe. Unfortunately, that legislation doesn't extend to herbal remedies and supplements in most countries. As is explained in: slate.com/articles/health_a...

Natural Does Not Mean Safe

Herbal supplements are unregulated, overhyped, and potentially deadly.

"In 1994, Congress passed the Dietary Supplement Health and Education Act, with heavy backing from the dietary supplements industry. By defining herbal supplements and botanicals as dietary supplements, DSHEA exempted them from the more rigorous standards used by the FDA in regulating food, drugs, and medical devices—essentially leaving it up to the industry to regulate itself. This single piece of legislation opened the floodgates to a rapid expansion in the sale of dietary supplements.

Between 1994 and 2008, the number of dietary supplement products on the market increased from 4,000 to 75,000. In the first 10 months of 2008, the FDA received nearly 600 reports of serious adverse events (including hospitalization, disability, and death) from these products and 350 reports of moderate or mild adverse events. However, the FDA believes that these reports are drastically underreported and estimates that the annual number of all adverse events is 50,000." (My Emphasis)

Quite often, we have members recommending something of which they have no personal knowledge that anecdotally helped someone overcome one form of cancer. It's generally not even a blood cancer and if it is, it is rarely CLL. Anyone studying the different cancer types quickly learns that while all body cells contain the same DNA, the varied expression of that DNA to provide a particular body cell results in different cellular pathways. This means that what may be effective against even another B-lymphocyte cancer isn't necessarily going to work on CLL cells.

Then comes the challenge of trying to work out whether something natural works on CLL cells. The vast majority of reputable papers only mention in vitro (test tube) studies. CLL cells are more fragile than healthy B-lymphocytes and are easily killed outside of the protective environment they carefully nurture in our nodes, spleen, bone marrow, etc: healthunlocked.com/cllsuppo...

Trying to get even good responses from carefully developed drugs specifically designed to target CLL is very challenging. With CLL being so heterogeneous and about 30% of us not needing treatment, it becomes extremely hard to establish without a clinical trial whether taking something natural had a beneficial effect or not. And that's before adding in the fact that 1 in 100 of us may have a spontaneous remission.

I hope that explains why posts about natural cures are very carefully examined by our volunteers, admins and other community members who want to ensure that the information we read here can be trusted.

Neil

[hmo1 in reply to AussieNeil]

Thank you for the information. I will make sure I do not post anything natural.

[AussieNeil Administrator in reply to hmo1]

You can post about natural things if you are sharing your experience. What is not encouraged is members pushing anything as a cure for CLL just because it is natural. There needs to be convincing evidence from a reputable source to validate such extraordinary claims.

[hsouter in reply to AussieNeil]

Excellent post, Neil! I thank the site’s team for keeping information shared here as safe as possible and evidence-based.

Heather

[hsouter in reply to hsouter]

Let me add that I benefit from hearing the perspectives and experiences of everyone regardless of a more conventional or “natural” orientation living with/ treating CLL.

Thanks!

Heather

[kathymac52 in reply to AussieNeil]

I am grateful to you Neil, for keeping the information researched based. My son and his wife are constantly trying to tell us to take this supplement or that....and told my husband who has CLL and lost 25 pounds that he needed to "fast" for 3 days to jump start his system. They have a Paleo diet, but since my husband is neutropenic he can't have fresh vegetable or fruits yet....They do it out of love, but they feel that chemo and drugs are just poison in our system.....I read an article written by a renowned CLL specialist who was very firm about not adding supplements to our diets without checking with a doctor... and many supplements are not regulated and are NOT safe.....

[hmo1]

Okay now I understand. I realize that we can not take all the same supplements as other people. We are all different with are illness. I have low platelets and if I took fish oil it could kill me. I always do research if someone says they took a certain vitamin I make sure it would not cause problems with my blood work. Thanks

[BeckyLUSA]

I agree with Spacee, I like hearing about new ideas; what I don’t like are the posts that seem to imply everyone has do it their way.

BeckyL USA