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CLL Support Association
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LDN

Doe anybody have experience or knowledge about LDN (Low Dose Naltrexone)

My personal Dr suggested that I look into this as a way of building up my immune system (I am currently at the W&W protocol)...Dr Google is no help.

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I am very interested in what our community tells you!!!

🙏💕😍☘️

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There is a spelling error... 🤣

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Pop Quiz, convert to subnet mask(s)

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Wow, it has been so long since I had to do any of that...almost 2 decades....but mostly it was a /24 255.255.255.0....class C I think it was called...

I confess, I would have to go look the rest up....is this an open book quiz?

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I know, I have forgotten most of my Chineses algebra lessons. Now days it is easier to plug into a software app or just google it.

When I first saw your reply, I started to sweat as I had flashbacks from networking exams!

Thanks for reminding me.

JM

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In my first computer class we did punch cards!

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I remember them but did not have to use them. I started on DOS.

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LDN has/is being researched, but you would be better served to check with your CLL Dr. before taking any medications not specific to CLL.

The following is a research paper that you can share with your CLL Dr. to have a discussion as to its viability/ lack possible side effects for CLL .

Also, let your personal Dr. know of the result of that talk with CLL Dr. It is good practice to have our different Drs. connected and in communication so we don't get medications that can be contraindicated for CLL. (You may be helping your personal Dr. learn more about CLL management, as well as your own learning.)

This quote form the link:

"As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental."

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

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I intend to speak with my CLL Dr. before taking anything.....but was curious if anyone had any insights. This paper is great thank you so much.

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‘But before LDN spurs too much excitement and is announced a “miracle cancer drug”, have in mind that much of the evidence is either anecdotal or stems from animal studies. No large-scale clinical studies have confirmed its cancer-fighting effects. What’s more, many animal and human studies used it only as an add-on to conventional treatments, or only once these treatments failed.’

selfhacked.com/blog/top-22-...

This article gives a very comprehensive overview but having read it, the main targeted conditions seem to be auto-immune as opposed to immune system malignancies.

Frankly I remain unconvinced but it’s something you need specialist medical guidance on. It’s not a medication I’ve heard recommended for our members in the past.

Newdawn

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Thank you for your insights

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It's huge in Israel. But my doc said not for CLL.

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Interesting

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Here is a good overview on LDN

sciencebasedmedicine.org/lo...

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Thank you CLLcanada....very good information

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Naltrexone is used to treat opiate overdose....I never heard of it being used to boost the immune system. It can intefere with various brain cell receptors....and honestly, my brain is screwed up enough without anything else messing with it.

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You're not familiar with low-dose usage scott. it is a different kettle of fish

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I was taking low-dose naltrexone for several months last year. It was part of a protocol that a naturopath specializing in oncology set me up on for addressing a different cancer (HPV-related anal cancer). So, although I wasn't taking it for CLL, the naturopath knew I also had CLL. Also there is an alternative/integrative MD in Toronto who does prescribe LDN for CLL cases (or at least some CLL cases).

I read quite a bit on LDN and the logic for using it in cancer. But for the short time I was using it (few months), I did not experience any tumor shrinkage on my anal cancer. And my CLL was already well controlled by ibrutinib. So I stopped taking the LDN because I don't want to be putting anything unnecessary into my body, and I wasn't convinced it was benefiting me in any way.

In theory, LDN briefly blocks opioid/endorphin receptors, causing body to produce more endorphins, which modulates immune response and supposedly suppresses inflammation and overabundance of cytokines. Commonly used by people with auto-immune disorders - especially Multiple Sclerosis people. (But from what I could see on LDN user groups, not all MS patients felt they got benefit from it).

Here is an interesting 2014 paper in Clinical Rheumatology on the subject of LDN as a novel anti-inflammatory for chronic pain conditions. (But of course, the anti-inflammatory properties would interest anyone with cancer, whether we have pain, or not, since cancer is fundamentally an inflammatory process.) ncbi.nlm.nih.gov/pmc/articl...

The paper concludes: "The totality of the basic and clinical research to date suggests that LDN is a promising treatment approach for chronic pain conditions thought to involve inflammatory processes..."

Good luck!

kim

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I probably would not give this any consideration if I was taking any medicine, but because i am currently wait and watch, i thought this might be a good way of strengthening the immune system. All the information that everyone has supplied is greatly appreciated.

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I think the best strategy for strengthening the body while in w&w, in preparation for CLL progression and treatment is daily exercise and clean up diet. Also, find happiness each day. I say this after researching and trying all kinds of "alternative" therapies and substances extensively - from LDN, to IV Vitamin C & mistletoe, to things as simple as probiotic supplements (which even that I now think may do more harm than good).

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I agree with you whole heartily. Best approach.

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I think I’d be concerned about a possible link with ITP although the case below was someone with MS;

uib.no/en/rg/kgj-ms/84764/n...

Newdawn

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I must admit I have never heard of such a linkage before. This seems to be a singlular case, and I would wonder of it was in fact the LDN that was even responsible for the ITP. Your link works. But the article within the story you link to is not available. So not possible to actually read the science behind this claim/case. I would be surprised if LDN has this effect because it is extremely widely used and I have never heard mention os ITP as possible (or experienced) consequence before

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It may well be a singular case Kim and possibly over-reported because it kept cropping up as a possibility with a lot I read about LDN. I’d bow to your greater knowledge and personal experience of using LDN.

I did find discussion of the concern linkage with ITP on other health sites and this was suggested; ‘medicines.org.uk says a 1:1000 to 1:10,000 chance of it causing ITP’. Hardly convincing and a wide risk margin.

I’d be more interested in it’s possible anti inflammatory properties than it’s application for CLL but would want to see more documented clinical studies.

It’s not something I’ve heard being prescribed in the U.K. except for it’s use in opioid dependency.

Regards,

Newdawn

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Yes, those are pretty long odds - 1:1000 to 1:10,000. Still, I guess something to keep in mind. I was surprised, through my own usage of it, to learn how widely LDN is being used - and by people who feel their lives are greatly improved by it. Moreso for people with chronic pain/stiffness from MS or other auto-immune thing, than cancer cases. But a certain amount of science coming forward on recent years on exactly how LDN modulates immune system, which can be meaningful for cancer treatment.

Apparently any doctor in UK can prescribe it (I was just reading) - and for an off-license use. Which is true in Canada & US. But in Canada & US, from what I am seeing, it is really only integrative MDs, or naturopaths, who are in fact doing the prescribing. I think mainly because more conventional MDs aren't familiar with it. In Canada, naturopaths can write prescriptions.

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My primary prescribed it upon my providing supportive literature.

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That's very cool! I have a feeling many primaries would be willing to prescribe it, where useful, if patients brought in the relevant literature to them to make the case for it and why it might be helpful. Most doctors just aren't familiar with LDN.

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Under the direction of a naturopath, I tried LDN last year. Prior to using it, my WBC was hovering around 30 for 3-4 years. Once I started on LDN, my WBC count started climbing and has not stopped, even after the drug was discontinued. I now rise about 8 points per month.

While on LDN, I felt fabulous! I stopped LDN after about 3 months, due to the changes in my blood-- but I miss it immensely.

I often compare trying it to poking the bear. I tempted fate and in hindsight, it was a mistake for me.

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That is one of my fears. this is still so new to me. My goal is to try put myself in the best position to fight this once the drugs are prescribed. So far it is hard to reconcile that I have cancer, yet I feel fine.

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I absolutely get what you are saying. I have tried different "natural" approaches to maintain or enhance my health to hopefully delay treatment. If your CLL isn't really bothering you, I think the best investment of effort is exercise and healthy eatting. I've tried so many (expensive!) things and with the exception of accupuncture-- there has been little response.

Enjoy how you feel now, and leave the worry for later.😊

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Your words ring true. A friend of mine told me that I should look at this as a new beginning. Live each day and don't worry what is around the corner. easier said then done...but that is what I am trying to focus on.

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I think one thing all of us with CLL need to keep in mind as we are researching and pursuing "alternative" treatments that may be helpful is that most alternative treatments profess to stimulate the immune system. CLL is a cancer of the immune system, so we may not really benefit from stimulating it. In fact, the conventional treatments for CLL are deliberately immuno-suppressive.

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Precisely my thoughts Kim. There’s also a world of difference between moderating auto immune conditions and immune malignancies.

Your input into this discussion has been most helpful.

Regards,

Newdawn

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What may help the average guy on the street does not mean that it will help those with CLL, may even hinder.

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I think the best strategy for strengthening the body while in w&w, in preparation for CLL progression and treatment is daily exercise and clean up diet. Also, find happiness each day. I say this after researching and trying all kinds of "alternative" therapies and substances extensively - from LDN, to IV Vitamin C & mistletoe, to things as simple as probiotic supplements (which even that I now think may do more harm than good).

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I am pretty conscientious about both exercise and diet. I have embraced the Paleo way of eating even before my diagnoses....So I eat clean, no sugar and very low carbs....The finding happiness and coping part has a ways to go.

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Kim, I'd be grateful for your ideas and any links to negative theories about long term use of probiotics.

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I did an extensive post here a few years ago, about probiotics and their use in CLL, perhaps you could try a search...

~chris 🇨🇦

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Hi BluMts. This was the first article I read that got me to question using probiotic supplements (i.e., in powders or capsules) and just work on restoring healthy gut microbiome by diverse diet with some live culture foods (yogurt, kombucha), and enough pre-biotic material (fiber) for them to eat abc.net.au/news/health/2018...

Article says: ""What was interesting was that probiotic use seems to delay one's normal flora returning [after antibiotic use]," Dr Worthley said... The best way of supporting a healthy gut microbiome, Dr Worthley stressed, was with a good diet. "Fundamentally what is indisputable is having a balanced diet rich in vegetables, which helps to foster a healthy microbiome. It's the cornerstone on which a healthy gut is built.""

And since this finding was in sync with my own views (health doesn't come in a pill or powder). I chose to believe it. haha! :D

Have since seen more recent articles along same lines.

kim

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Hi Kramnitus,

It’s good that you’re wanting to prepare yourself as best you can, for what might lie ahead on your CLL journey. It can be confusing though, to know what will really help.

I think you might find the following post useful. It’s a list of “29 Things we can Do” to help our journey with CLL".

healthunlocked.com/cllsuppo...

This post is very much a joint effort from members of this community - a collection of points that folk have found helpful over the years. They are relatively simple, practical things that we can do ourselves. Not everything will be relevant to you, as we’re all very different. You’re probably doing a lot of them already, such as improving diet and exercise. But you may find some useful points there.

Wishing you all the best for your CLL journey,

Paula (in Yorkshire, UK).

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that's very interesting - and worrisome for CLL patients. thanks for sharing.

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This is interesting . Having been involved with addiction related issues, I am familiar with naltrexone as a drug used, usually as a implant or a long term bolus injection used with opiate addicts to stop them the heroin or whatever from giving them the effects they take it for. My experience is that a lot just switch to different drugs. Presuming it still works in the same way but to a much reduced level if medically prescribed as LDN, alongside whatever it is doing for the CLL, it will at least partially block the effect prescribed opiate pain killers. A problem for me because I take opiate based pain killers due to spinal damage after an accident. Not sure if other people are in a similar situation.

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At the lower dose naltrexone acts totally different.

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Thanks, I will have a look at some of the papers about it

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It is true that it LDN will block opioid pain killers for a SHORT time (few hours). Most people take LDN at night because endorphin production peaks between 2:00-4:00 am. You could take short-term opioid painkillers in daytime, and they would work, but if you need them at night to sleep, and if that's when you are taking the LDN... then the general view is that the nighttime painkiller would not be effective for you.

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I do have them at night - 4 times daily.

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Hi, I was encouraged to use LDN for my musculoskeletal pain by some friends who are having success with it for their Lyme related pain that is quite similar. I found a pharmacist who could compound it. My CLL specialist was on board with it. I started at the lowest dose of 1 mg then increased to 1.5mg after a couple of weeks and then eventually up to 4.5 mg, the maximum recommended dose for low dose. I used it daily for about a year. I did find some pain relief from it but also found that on my "bad" days if I used my oxycodone that became totally ineffective. I have since stopped using the LDN and use CBD/THC & oxycodone for breakthrough. I experienced zero side effects from the LDN save for the blocked oxy effects.

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I was diagnosed with SLL in 10/17 and put on W & W. My doc told me that my immune system was compromised (seems that if you have SLL it is by definition, my blood counts were and have remained good). So I consulted an old friend MD who does "integrative medicine". He changed my diet, gave me vitamin C infusions and LDN. I did feel better and had more energy, but the SLL progressed dramatically during this time. I have been on ibrutinib since 1/19, and feel even better. By the way, I have had fewer colds since my diagnosis, but this may be because I try to avoid exposure to them.

Mike

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I have been taking LDN for over a decade. There seems little downside, so my oncologist had no problem with it. It is better tested for self immune diseases like Crohn's and Lupus.

A good website is lowdosenaltrexone.org/event...

But there is some evidence around that it is helpful for cancers. Like for many inexpensive drugs and supplements, drug companies are not going to sponsor expensive trials.

Another of example of this is Metformin. Type 2 diabetics that take it have 1/2 the incidence of cancer, but it has not been tested in large trials on non diabetics. I also take Metformin and am not diabetic. There is good logic for this and large amounts of evidence that it is safe and anti-cancer, but it remains off-label for CLL and all cancers outside of diabetic patients.

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Isn’t that used for thyroid disease?

Sincerely

Farrpottery

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