Honokiel

[Steffi50]

Hi All, I was wondering whether anyone else had come across ww.cancerfightingstrategies.com website as they seem to have a wealth of information on cancer and one in particular suggest that Honokiel (I hope I have spelt that right) can kills B-CLL. The stuff they are recommending is not cheap but if it was effective would try to afford.

[lankisterguy Volunteer]

Hi Steffi50,

We have seen that website and others that include the many "cures" and natural treatments for cancer.

We suggest you read the "Pinned Post" in the box to the right: "Good article on navigating complementary cancer treatments":

healthunlocked.com/cllsuppo...

click and read the links provided and especially read the replies by AussieNeil

Len

[Steffi50 in reply to lankisterguy]

To you and to AussieNeil thanks. I suppose I am always looking for a way out of this nightmare that is CLL. I am so glad I have you guys to refer to.

[cllady01 Former Volunteer]

here is the disclaimer copied from that site:

Disclaimer: These statements have not been evaluated by the Food and Drug Administration. The products and information contained herein are not intended to diagnose, treat, cure, or prevent any diseases or, medical problems. It is not intended to replace your doctor's recommendations. The information is provided for educational purposes only. Nutritional benefits may vary from one person to another.

[Steffi50 in reply to cllady01]

I replied to the others who also wrote. I am just so desperate to get out of this nightmare that is CLL. I should use my own best instincts really. Thx for taking the time to write

[AussieNeil Partner Founder Admin]

Not impressed by the site. Note the disclaimer for that marketing website:

Disclaimer: These statements have not been evaluated by the Food and Drug Administration. The products and information contained herein are not intended to diagnose, treat, cure, or prevent any diseases or, medical problems. It is not intended to replace your doctor's recommendations. The information is provided for educational purposes only. Nutritional benefits may vary from one person to another.

The paper below reports on in vitro testing of the activity of honokiel on CLL cells, but Wikipedia notes neurotoxic effects at high concentrations and "However, its antithrombotic effects could cause hemorrhage especially in patients with conditions that would put them at a higher risk", which I would think should include CLL, given its impact on platelet counts.

bloodjournal.org/content/10...

[Steffi50 in reply to AussieNeil]

Hi AussieNeil thanks for this and for taking the time to reply. Just would love to believe there was something out there. Maybe just have to learn to accept I have this disease and it is here to stay

[AussieNeil Partner Founder Admin in reply to Steffi50]

I appreciate that many of have a strong need to be doing something. That's why I worked hard to improve mt physical fitness, improve my already fairly good diet to include more vegetables and started taking high dose green tea capsules. That at least has the best in vitro evidence of effectiveness through a phase 2 clinical trial.

The challenge with CLL is that any treatment brings with it the risk of accelerating clonal evolution. Given that supplements and herbal remedies are unregulated in most countries, we need to remember that we may just be better off not encouraging the development of tougher CLL clones...

Neil

[JR1964 in reply to AussieNeil]

Neil, I do not like doing supplements or vitamins. I just drink green tea and every other day use the Tumeric/Black Pepper on foods I eat. I know it may not do much good but at least I am eating better. I will do ginger here and there as well as other spices also. My question to you is , do you still feel the same about probiotics. Safe to use as long as your ANC is within a good range. I know there is controversy on this subject and eating live cultures. But for myself I sure feel better when I do. Just wondering.

[AussieNeil Partner Founder Admin in reply to JR1964]

Probably safe to use provided your ANC is adequate, but a question best addressed to your specialist, given the following.

From Review Articles - Oxford Academic; Probiotic use in clinical practice: what are the risks? watermark.silverchair.com/z...

Infection

The most important area of concern with probiotic use is the risk of sepsis.

:

Risk factors for probiotic sepsis

All cases of probiotic bacteremia or fungemia have occurred in patients with underlying immune compromise, chronic disease, or debilitation...

[JR1964 in reply to AussieNeil]

I asked Dr. Weirda when I saw him and he gave me the ok. Then, about a month later I emailed him and said ok to use again. But there is something that is telling me to stay away. I think I am going to follow my gut instinct on this one. I just mainly use the cottage cheese. Nothing else. Thanks for the links. STAY STRONG J.R

[Que-sera-sera in reply to JR1964]

Hi....JR1964...just to say I found some humor in speaking of probiotics and you saying you should go with you "Gut" feeling

I know prolly not that funny, but take it from someone with a lot of "gut" issues...and btw, I just got thru with taking antibiotics for Sibo and I'm supposed to help my "gut" by taking probiotics, but I'm also afraid of ending up with the wrong stuff, so is the classic "rock and a hard place".

I must say, I do take very small amounts of ACV and kimchi here and there (not even daily) and more rarely a bit of yoghurt, but don't want to over do it and certainly wouldn't take those capsules with "billions" of God knows what.

Best regards.

[Steffi50 in reply to Que-sera-sera]

I take Symprove which I was told is OK and it has really helped.

[Que-sera-sera in reply to Steffi50]

Thank you Steffi50..I could maybe try a specific brand that one of us is using and has proven safe.

To be honest I have not even checked with either my CLL specialist or even my gastro perhaps I should and see what they say.

Thx again.

[BeckyLUSA]

There are “live” probiotics and then there are probiotics that are not “live”. I use the ones that are not alive while I am on an antibiotic to keep things in balance. Okayed by both my CLL specialist and my GI doc. Both are concerned with sepsis. So far, for me they have worked. No diarreah or yeast infections. I use Florastor (US). It is a little pricey, but I only use it when I’m using an antibiotic.

BeckyL

[Robgump]

Laetrile, "balm of Gilead" all of these hyped "cures", don't fall for the marketing, we have been trained to see slick advertising as truth.

There is no replacement for motivation to learn and fight for your life. Educate yourself with unbiased works, learn about your disease as much as you can, from whom you can trust or whom "have a horse in the race" to paraphrase.

[Cllcanada Top Poster CURE Hero in reply to Robgump]

I had a balm from Gilead.. its called Zydelig (idelalisib), and it saved my life...

🤪

[Robgump in reply to Cllcanada]

So when I go to a website and order "balm of gilead" I will get Zydelig? Wow, did not know that. I had some relatives that ordered it, got black smelly goo, snake oil.

[TAS50 in reply to Cllcanada]

What is that and how did it save your life please