I've heard about LDN as a last resort and as an almost last resort, but what about LDN as an adjunct?
So far most of the web pages I have run into are run by the same outfit with the same doctor's name -- excepting a few studies done elsewhere that haven't involved cancer. I am not looking for trouble I just need more than one hip hip horray site to convince me -- the real life testimonials HERE have done more for me in that regard and I appreciate it so very much.
FOR THE RECORD I AM NOT A NAY-SAYER TO THIS OR ANY OTHER ALTERNATIVE TREATMENT!! Especially without more facts.
I just thought I'd say that because I've been challenged as a poo-poo naysayer before when I was really asking SERIOUS questions that I seriously wanted answers to.
I love my chemo in that it seems to keep me alive with few side effects but I'm especially interested in things I can do alternatively that will increase my odds or even take over and do the job. I'm almost ready to take my cyanide pills too :) We're talking apricot pits but let's not go there today.
My ONLY problem with LDN as far as just trying is I'm really suspectible to meds that disturb the sleep (there's a cold med that gives me nightmares for gosh sakes and a small dose of wellbutrin past noon will keep me up as badly as a dose of steroids!) -- but I'm still willing to do anything at this point that will hedge my bet.
So LDN as an adjunct. Pros? Cons? Contraindicated? I'm seriously considering if possible taking it WITH whatever chemo I stick with/move on to before I try the risk of the coumadin with avastin we're contemplating. If it helps boost the remaining chemo or tarceva I might be more inclined, to at least stay stable.
My doctor admittedly knows nothing about this medication, and though my GP will probably know more but not in relation to this particular use she won't be any more help than me and my keyboard at this point.
What say you? And don't you dare yell at me or I'll take my toys and go home. :(
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QUESTION ONE: LDN as an adjunct
- By Granny888
- Posted November 4, 2009 at 9:18 am · 15 replies
- In Treatment options
- Shared with the public
Explore topics in this discussion:
Cancer Depakote Coumadin Avastin Pancreatic cancer Wellbutrin Chemotherapy Pain Lupus Tarceva Lung cancer
15 replies
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- By cuddles53
- Posted November 4, 2009 at 10:34 am
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I am not an expert by any means here, but I would take it if I were you. I read a lot about it on the LDN site in which somehow I am a member, I didn't know how I got into it so don't ask, but I get daily reports from people, and they are unbeleivable, enough so it has convinced me that it will be a drug I will most like ly choose. The only problem is, if you are taking any narcotic pain meds, they will not work. This was originally, and still is for drug addictions given in higher doses. The site will also give you names of docs in your own area who do write the scripts, this support group of LDN members know how, and where to get the prescriptions./ It will or is supposed to boost your own immune system, not help the chemo drugs you are on. Take care, and granny good luck. And also No need for you to take your toys home, I want to play with you. OOps this sounded bad didn't it, well you know what I meant, and it wasn't meant to be dirty. If you want to give me your own personal e-mail I will forward some of the info to you. I do not know how to figure out what this place the web site is only to tell you to go and look up LDN on the internet and go to it if the say official site, i think this was how I found them, and somehow I signed up to be on this list. it is a good one and is informative. Take care Sandy
- By debra1
- Posted November 4, 2009 at 12:24 pm
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I want to mention that I had read that LDN has only shown to help NSCLC. Not all lung cancers.
- By Granny888
- Posted November 4, 2009 at 12:29 pm
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How it works is that it basically closes down the pleasure centers -- it's used not just for narcotic addiction but other addictions as well. One of our psychiatrists (we've been through a few!!!) actually used it with Depakote to fight the amazing hunger that comes with it -- treated it like a food addiction. Works wonders but was hell on the liver, as is depakote so that was a bad combo.
I have actually been prescribed some oxy but if I were to use it it wouldn't be regularly, in fact I said OK to it after hesitating and don't have to take it. I'm betting strongly on hip/thigh mets and as long as I'm getting my cerebellum done I may as well do my hip, I hear that works pretty fast on pain and I just realized I still have my TENS unit.
Just seems like if my wonder drug has become risky (risky to take AND risky not to take) I'm at that point where anything will help -- as long as I can take them together. I'm not ready to throw my eggs into another basket, just add an egg or two to the one I have now.
- By Granny888
- Posted November 4, 2009 at 12:31 pm
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Well then, here's one NCLSC candidate willing to do -- well only so much -- to help herself out of the conundrum of having miracle drug #1 contradict miracle drug #2.
- By gemhk
- Posted November 5, 2009 at 4:17 am
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Hello,
Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. Many body tissues have receptors for these endorphins and enkephalins, including virtually every cell of the body's immune system.
In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day) on the body's immune system. He found that this low dose, taken at bedtime, was able to enhance a patient's response to infection by HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult dosage of LDN has been found to be 4.5mg.]
In the mid-1990's, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN.
Dr. Bihari had experience with Lung Cancer (Non-Small Cell) BUT LDN works on virtually ALL opioid receptive cancers INCLUDING Lung cancer (both small cell and non-small cell) as found by research done by other:
Research by others — on neuropeptide receptors expressed by various human tumors — has found opioid receptors in many types of cancer: both small cell and Non-small cell lung
There is much research and anecdotal evidence to support LDN. The Yahoo Health group- "LDN links section":
http://health.groups.yahoo.com/group/LDN_4_cancer/links
Has most of the main research papers, discussions and reports...
Also there is weekly radio blog on LDN ONLY that anyone can listen to:
http://www.blogtalkradio.com/mary-boyle-bradley
You can listen to doctors and patients who are using LDN currently and the archive shows...
Dee
2 3/4 years on LDN for stage 4B cancer.
http://www.ldn4cancer.com
- By ACS
- Posted November 5, 2009 at 5:16 am
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Dee, you are a powerful advocate of LDN and I'm thrilled it has worked for you and I always look forward to your feedback.
Some of the literature I have read suggests LDN can be a powerful adjunctive therapy for many types of diseases, including lung cancers.
But, I must admit, I remain a little perplexed by the whole LDN story, as do many of the medical people I speak to.
Certainly, my own experiences have been less than convincing with definite side-effects and a feeling that my health balance had been disturbed.
The LDN forum site also leaves me cold: when preople start bringing up the old "it's the candida" excuse for side-effects, my confidence is diminished.
What needs to be ecxplained is that LDN is not a natural supplement that somehow "corrects" the immune system. That is just absolute nonsense.
It is a pharmacological agent that may just have an effective pharamacological action on opioid receptors on some tumours.
It certainly seems to have a immune-stimulative effect in SOME people (as the evidence in auto-immune conditions like MS seems quite convincing).
But the sweeping statements that LDN can help everyone with cancer is a bit of a worry, in my opinion.
That's not to say I'm not prepared to keep persevering.
But I am not convinced it is without side-effects and I'm certainly not convinced it is the miracle drug the LDN forum site suggests it is.
- By Granny888
- Posted November 5, 2009 at 9:20 am
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Those are most of the sites I've looked at but as I said that's ONE doctor's site -- I'm not not convinced, and I know about its use on the pleasure centers of the brain and I know it's legit. I also know several studies have been done on this off-label use but most of the official studies have been done on HIV, MS, etc. What I'm looking for is answers, what I'm trying to provide is direct questions that I'm looking for answers for.
Specifically, this time, as an adjunct therapy. In all the reading I did yesterday I saw this line ONCE and would like to know more.
I have my app in for one of the yahoo groups, provide more real life answers -- if there are other websites by other doctors (we're talking at least 25 years of study there should be some) I'd be very interested in reading them as well. This is under very serious consideration as an adjunct.
- By Granny888
- Posted November 5, 2009 at 9:22 am
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Those are most of the sites I've looked at but as I said that's ONE doctor's site -- I'm not not convinced, and I know about its use on the pleasure centers of the brain and I know it's legit. I also know several studies have been done on this off-label use but most of the official studies have been done on HIV, MS, etc. What I'm looking for is answers, what I'm trying to provide is direct questions that I'm looking for answers for.
Specifically, this time, as an adjunct therapy. In all the reading I did yesterday I saw this line ONCE and would like to know more.
I have my app in for one of the yahoo groups, provide more real life answers -- if there are other websites by other doctors (we're talking at least 25 years of study there should be some) I'd be very interested in reading them as well. This is under very serious consideration as an adjunct.
Thanks for the links link -- I seem to be able to get that one at least without waiting for a join-in, and will look at the other articles this morning. Great help!
- By gemhk
- Posted November 5, 2009 at 9:47 am
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Naysayers are fine when one has time to explore options and other alternative.
Most statements posted here about LDN are incorrect... LDN is not an immune stimulative, it does not stop 100% of all cancers, some who have sleep disturbances in beginning taking LDN will take a lower dosage 3mg and work their way up to 4.5 mg. but LDN has virtually NO side effects.., It is NOT a miracle drug as been around since 1985 and is already off patent, it is simply old drug- new use....
I did not have any options except palliative chemo and prognosis of 6-9 months. I talked long distance from Hong Kong to New York for over an hour with Dr. Bihari about LDN. He said LDN would help me and he was right.
LDN will not help 100% of those who take it so I don't know where that statement came into play .....
BUT LDN will help about 60 -70% ( Dr. Bihari's cancer patient experiences) when most have exhausted all conventional therapy treatment-( meaning Stage 4)
So for some of us taking LDN we HAD no choice. I have met these people at the 4th annual LDN conference in Los Angeles held at USC Medical center in 2008. We all had various diseases ... MS , Parkinsons, Cancer, etc.. and shared stories about LDN has given our lives back. ( Posted on LDN website Conference 2008) We also helped other who attended who wanted to know more about LDN etc.
Those who doubt can wait another 25 years for "possible" cancer clinical trials or other research to be done. That is fine if time is on their side.
I am just happy to be here able to type this.... LDN is safe, non toxic and virtually NO side effects. As Dr. Skip says "It's a NO Brainer". My husband even takes LDN and he isn't sick... He takes it as a preventative.
Dr. Bihari said anyone who has cancer in their family should take LDN as a preventative.
Dee
- By Granny888
- Posted November 5, 2009 at 10:41 am
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Dee,
I love your story but please be advised that side effects are largely individual. I particularly am prone to sleep disturbance medications and also to effects of medications opposite what they should be.
Like I said I'm looking for real-life stories. I have time to research a couple weeks anyway and I can't take the word of what boils down to one site/one person (even if it's split up).
I am strongly leaning toward LDN because I'm not stuck on meds in the inner circle -- but I still need at least antedotal response here. I've done the basic research on most of the limited sources, I'll find more. In the mean time I want real people to tell me their experiences in this:
QUESTION ONE. LDN as an adjunct medication.
I've seen meds used in their non-approved forms for good things. I don't want to wait for studies I want to know what is going on and for some reason every time I try to get answers I get slapped in the face instead. I'm not saying no I'm not saying yes I'm saying TELL ME. I can only read so many pages by the same guy before I start to wonder. My own doctor hadn't even heard of it -- fine. My cousin's doctor isn't for it -- fine. My regular PCP might consider it on a trial basis is my guess -- extra fine. I see a specialist at Johns Hopkins in two weeks for more opinions and as an explorer of medications I look foward to his response to this question. In the meantime, how about it?
QUESTION ONE. No one here try this? That's fine too. Say so. I haven't gotten to question two yet.
I don't see where the naysayers are. I thought this would be a good place to ask my specific question. Questioning is not the same as naysaying -- this is how we get from point A to point B, by asking. And I've read Dr. Bihari -- I want, after 30 years, to hear Dr. Someoneelse ... I've seen a few in unrelated studies but so far (only so far I'm not done looking) I haven't seen it.
I don't think any type of blanket statement can be made without some more studies, and I know those take time. I don't need blanket statements, you know how I feel about stats and studies that are inadequate. I mean you can't say any more that it cures all is a good preventative or has no side effects or dangers but you can say it saved YOUR life and the lives of more than a few others and you know of no or few stories of bad side effects.
People are SO different. I have a son who takes half a dose of his miracle med and not a doctor alive doesn't first try to double his dose because he's so big that amount can't possibly do anything. We tend to be this way by familiy genes, but we're not the only family or individuals like this. I mention this because it's fine for you to say it works great for you and tends to have low to no side effects, but the way you put it anybody could pick it up have a nasty side effect and blow it all out of proportion. See what I mean? We need to stay realistic here and saying take this there's no problem is rarely true with anything.
Question One. Any answers?
- By Granny888
- Posted November 5, 2009 at 10:46 am
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p.s. I don't want to wait until it is my 'last choice' to try it. I'm looking for more answers NOW, before I reach that point, and I've got so much going on I really have to break this up into specific questions.
One of those links led me to some more answers on laetrile that no one seemed to want to give me before. That was great.
- By ION43
- Posted November 5, 2009 at 12:00 pm
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Hi Granny, Sorry, don't have any solid answers, but I've been taking LDN for 8 months and there are no new mets seems to be my best news. Everyone says it takes at least 6 months for a positive response; don't know what I'm having yet. I was inoperable stage VI last Oct. with two primary tumors in left lung and they are both still there. They got slightly larger after tx of Carbo/Taxol and seem to be regressing a little now but is it from tx 2, Gemzar (ongoing) or LDN or both? My shotgun approach of treatment leaves a lot of questions but when they say "you have a year to eighteen months at best" I decided I'd try anything, even apricot pits if I can get enough of them.
I understand your worry about sleep disturbances, I'd still try it and see how it goes, you can always make adjustments in dosage and timing.
Good luck
- By Granny888
- Posted November 5, 2009 at 12:22 pm
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Thanks. That helps a lot and I think I'll ask for a lower dose to start. I'm finally finding a little more on the apricot pitts, my daughter in law wants me to 'overdose' on them but even an under-dose causes more nausea and tummy problems for me than chemo ever did. I'm still going to start using some,and likely the LDN as well,at the lower dose to start. It's another adjunct that will more likely help stabilize things than not. If I figure out differently I'll say so.
- By ACS
- Posted November 5, 2009 at 4:44 pm
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My understanding is that it is often used as an adjunctive therapy, but some people who have declined chemotherapy have had good results just using it on its own.
Just for the record, I am not a naysayer on LDN and it is not me saying LDN corrects the immune system. You can read those comments elsewhere.
I am interested but perplexed by the LDN story, but I would suggest it is certainly worth pursuing as it can't do a lot of harm.
Certainly, some people - ike Dee - swear by it and that's very encouraging for all of us looking for answers.
- By Granny888
- Posted November 5, 2009 at 6:39 pm
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Yes, that's VERY encouraging.
But as I've said before, anybody who says no side effects hasn't met me -- I'll have to side effects to medicines that typically cause side effects and loads to others ... it's just one of those blanket statements that can't be said -- and another of course when doctors and others think "no big deal, no harm" and those are the ones that trigger mania and other craziness. We're a more significant part of the population than you think I'm just forgetting the word for it.
Doesn't mean I won't try it anyway, I will, but being "one" of those people (I know this word AARGH!!) I like to be careful about misleading anyone else who might believe "no side effects!!!" means no side effects. Might not.
Lets hope, in this case, that it does.
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