Just passing on that Consumer Labs just published an article about melatonin negatives, one of which is that it increases lymphocytes! That's what it said. Since I have quite enough lymphocytes, thank you, I am going to wean myself, last night taking 5 mg instead of my usual 10. Just something thought others might want to know.
Melatonin--beware?: Just passing on that... - CLL Support
Melatonin--beware?
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Vlaminck
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SofiaDeoAdministrator
Mmm I am reading the stimulation is more along the lines of antibodies. And it increases other cell types too, not a selective B lymphocyte stimulation. It's good to be aware of, for sure. I am sure at least some of us may have adverse effects.
There are effects from loss of melatonin as we age, so IDK if maintaining a level similar to what we had in our 30's would hinder or be helpful overall. I mean, vaccines also cause some lymphocyte stimulation, or they wouldn't make antibodies. And we are asked to get vaccinated, so I would imagine a small amount of "stimulation/proliferation" may not contribute excessively to CLL lymphocyte growth.
biologyinsights.com/melaton...
sciencedirect.com/science/a...
The article just said it has been found to "increase lymphocytes." Maybe I need to reread but don't recall anything about "stimulation' as such, except to the extent increasing lymphs may be so considered. Yes, maybe it stimulates helpful T cells?
I haven’t researched it but a cursory google search of “melatonin” and “lymphoma” brings up articles where there is interest in melatonin's anti-tumor activity.
I relied on it to get on a regular sleep schedule for a new job recently.
We abuse it in the USA. In other countries it is regulated and you need a prescription.
I can’t believe people just take 10mg melatonin pills every day. You can get time-released 1mg formulations i find it is just as effective. As for what it does with b-cells if it stimulates production then you have to wonder if its increasing good/bad b-cells equally
"Higher doses may cause anxiety and irritability.
The best approach for any condition is to begin with very low doses of melatonin. Keep the dose close to the amount that our bodies normally produce (< 0.3 mg per day)."
mountsinai.org/health-libra....
Seems like I'm done taking the 1mg I was taking. Supplements are a minefield. Thanks for the post!
There are dozens of studies suggesting that melatonin is beneficial for a range of cancers:
Synergistic Cytotoxicity of Melatonin and New-generation Anticancer Drugs Against Leukemia Lymphocytes But Not Normal Lymphocytes:
pubmed.ncbi.nlm.nih.gov/280...
cancerci.biomedcentral.com/....
pmc.ncbi.nlm.nih.gov/articl....
pubmed.ncbi.nlm.nih.gov/332...
pmc.ncbi.nlm.nih.gov/articl...
I generally regard any articles dissing melatonin as big pharma propaganda.
Note melatonin may have side-effects and interactions - such as:
May cause lurid dreams. Also following day drowsiness - in which case perhaps reduce the dosage. Some people get melatonin diarrhea. Not to taken with antidepressants , benzodiazepines such as temazepam (for insomnia) or diazepam (for anxiety or muscle pain). Caution with medicines that lower blood pressure or Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, naproxen or diclofenac.
Thanks, Alexask. I've learned with disappointment during my 5 year journey so far that things that appear beneficial for "cancers" or even "leukemia" and get me excited are not necessarily at all beneficial for CLL. Most of your articles are for breast, colon, thyroid. One of your articles addresses "leukemia lymphocytes" (are those Bcells?) but goes on to address its use with medicines we don't use much or at all for CLL that I know of. I now always try to research ncbi with CLL included. If it doesn't say CLL, then for me it's not necessarily beneficial for that disorder (altho might be generally healthy). I also look at the date. Things change so much. And by the way, as those on here can attest, no one is more food and supplement-oriented, suspicious of big pharma than me.
A reasonable response.
A little more searching on CLL and melatonin reveals this:
pmc.ncbi.nlm.nih.gov/articl...
From Table 1
Significantly lower serum melatonin levels were observed in CLL patients compared to healthy subjects.
Which would suggest supplementation may be beneficial .
It goes on:
...Therefore, apoptosis is a pivotal mechanism for restraining tumour progression and several studies have demonstrated that melatonin promotes apoptosis of myeloid leukaemia cells...
Anyway it goes on at length - I am not sure how much is specific to CLL, but it looks on the face of it somewhat promising.
The problem as you know is that, like all supplements, there is little money for testing the efficacy of melatonin because it's off-label, cheap as chips and can't be patented. I don't have CLL, but have been taking 20 mg of melatonin for another issue since 2016 and haven't had to see a Doctor since 2017 for anything but some ligament damage. As well as various cancers there have been studies that claim benefits of melatonin for cardiovascular, macular degeneration, stroke severity, dementia and even sepsis.
So I would suggest the greater risk here might be not taking melatonin. Note it only stays in the body for 5 hours so perhaps splitting the night time dose if one is in the habit of waking at 2/3 am.
Also the bioavailability of melatonin is supposed to be only 3% so taking higher doses might actually be more beneficial.
I also thought this thread of interest when it comes to pain relief:
healthunlocked.com/cure-par...
Alexask andVlaminck , the Leukemia Lymphocytes referenced (Jurkat, Malt - 3 and MALT-4) are all acute T cell leukemias; That might be good news for people with T cell blood cancers, as they have significantly poorer survival statistics than CLL. I couldn't find any mention of B cell blood cancers in those references.
Alexask, if you had read the (Miller et al., 2006). referenced in support of what you quoted, you would have read, with my emphasis, "In particular, melatonin is a powerful antiapoptotic signal promoting the survival of normal granulocytes and B lymphocytes." That's the last thing we need!
Neil
Neil, I believe that the operative word in that quote is "normal". As I've been reading up on this subject, I did find that melatonin does have the same type effect to both mutated and unmutated B cells, but it affects the mutated one more so - very much like melatonin going, "Sound off!" and unmutated goes, "Here" and mutated sjumps up screaming "HERE!!!" (Well, not so much). Supposedly, that makes it a much better target. Here's that quote with the concluding sentence (my emphasis): "In particular, melatonin is a powerful antiapoptotic signal promoting the survival of normal granulocytes and B lymphocytes. In mice bearing mid-stage leukaemia, daily administration of melatonin results in a survival index of 30-40% vs. 0% in untreated mice." (academia.edu).
There's no real way to thank you for all the knowledge that you've imparted to me/us on this site over the years, but I will tell you, you have helped to make me feel more empowered by your information. You've shown that researching through properly-sourced information is the only way to educate oneself.
Keep on.
I went down the rabbit hole with papers and AI researching natural compounds that halt or slow progression of CLL from a preventative not curative standpoint. There seem to be a whole host of compounds that might onteract with cells, results seem mixed or of unknown total effect. Tl;dr none of them are a cure nor are any porbably as good as exercise and stress management (maybe fasting) And healthy ideal weight particularly shedding visceral fat stores.
The most compelling information I found was on:
ECGCs (polyphenols) from Green Tea
Turmeric (taken in evening long after from green tea - not together)
^ these two have the strongest support
Apigenin (from chamomile flowers)
Hop Flower Extract
^ these two are close to the top as well
Others include:
Shiitake mushroom
Vitamin C at high doses achieved by IV or liposomal preparations (may create reactive oxygen species that kills faulty cells not good ones).
baby aspirin or white willow bark
And a long list of others with various possible potential to trigger apoptosis or act indirectly
Unclear is whether any of these would help me with deletion 17p . Since most of these are common foods I just take them in alternation
I have a long detailed list with the mechanisms of action or theories if anyone wants to peruse it (it does not constitute any actionable advice or medical recommendation obviously and talk to your doctor before adding any supplements)
Look up luteolin
Have you found anything relevant to luteolin and CLL that is more promising than this 2016 paper CLL Potentiation of luteolin cytotoxicity by flavonols fisetin and quercetin in human chronic lymphocytic leukemia cell lines?
pubmed.ncbi.nlm.nih.gov/274...
It was a cell line in vitro study of the enhancing effects of flavinoids on luteolin, which concluded, with my emphasis;
As a result of this, luteolin displayed cytotoxicity activity already at low micromolar concentrations that could potentially be physiologically achievable through oral ingestion. No other tested flavonoids were capable of sensitizing CLL cells to luteolin pointing to a specific binding of fisetin and quercetin to the cellular targets which interfere with the signaling pathways induced by luteolin. Although further molecular studies to unravel this potentiating mechanism are certainly needed, this phenomenon could contribute to future remedies for prevention and treatment of chronic lymphocytic leukemia.
Taking into consideration the challenges of determining whether it's possible to achieve a safe oral doses of both flavinoids and luteolin with the right ratio and timing, that might overcome the CLL tumor micro-environment, that's pretty low odds of having a worthwhile effect without causing side effects.
Neil
Over the past few years, I've come across a fair number of articles, none of which do I have handy for you. All found by googling ncbi. I've been taking it daily. I can also tell you that I used it topically myself when I developed a spot on my face that the dermatologist thought was CLL related and wanted to biopsy. I wanted to delay so he prescribed a steroid. Did nothing. Next time I saw him, he prescribed something else I never picked up from the drug store but instead applied luteolin, often mixed with DMSO so it would go into the skin better -- and the damn thing of a few months just went away. Completely. Been over a year, maybe two years ago. Reported it to my oncologist and he wrote down luteolin then probably threw the paper away. I've had a couple other experiments topically with it and have since seen articles about its topical use as well. Since I've never seen an article on its amateur use intake for CLL, I am just proceeding on the theory that it is anti-Cll so have been taking one or two capsules twice a day. The capsules I get have either 500, 600, or 800 mg. I do take it with fisetin and/or apigenin and/or quercetin. It hasn't stopped my WBC from climbing, so maybe not taking enough. Have found nothing negative about it but quite the reverse. So, like so many of us, just winging it. Wish I had more scientific info to give you (it is a bit of a BTK inhibitor and BCL-2 inhibitor, I've read). By the way, coincidentally?, I've been craving celery off and on, and often eating a whole batch of it -- and its prominent flavonoids are--tada: luteolin and apigenin.
PS re my WBC continuing to climb. I am in W&W with mostly good markers (a bit of CD38), but I think my fight is harder because I also have chronic epstein barr which keep coming and going (last 3 blood tests found I had the virus in blood tho low level) and ebv attacks Bcells, which doesn't help, I believe. I am going down to MDAnderson in May to see a doc that does some focus on CLL with ebv, the only one I could find.
Can you tell me what DMSO is? I have lots of those pesky CLL related skin bumps (leukaemia cutis).
I tried apigenin supplementation, despite knowing that it's pretty unstable in supplement form. It gave me MARKED insomnia (almost no sleep in 2 days)! So surprising, considering chamomile is often included in herbal sleep preparations.So I'll stick to my home-grown chamomile tea in the evenings (and green tea at teatime)...
Have you tried apigenin? Did it affect your sleep?
alexask -
I generally regard articles hyping the medical benefits of inexpensive substances as attempting to counter pharmaceutical propaganda. i.e. hype vs hype.
I don't find that in-vitro research is worth my time to read. It has its place in biochemistry, but that's way above my head. I don't take any encouragement from it at all.
What's needed is specific in-vivo research that cites dosages and effects. When I do find such research, it's almost always underwhelming. e.g. EGCG
=seymour=
I pretty much agree. I like green tea , turmeric, and chamomile & hop tea anyway.
I don’t put a ton of stake in it. I think aboiding trash food/alcohol/pollution , exercise , maintaining an ideal weight and possibly fasting (i’m going to do this with doctors supervision / labs) are each ten times better as strategies.
Hi, both my naturopath and oncologist have recommended melatonin (I take 10 mg) for sleep. I take CBD 25 mg with it. From what I can see in scholarly publications, there is no evidence that melatonin has a negative impact on CLL patients. I would definitely ask your doctor, especially if you feel that melatonin is contributing to a good night’s sleep.
With all due respect, doctors are the LAST people I would ask about nutritional supplements. Seriously. They just don't study them (excepting researchers) and seem a bit naturally biased against them. Maybe not naturopath but what I wrote is from an article in ConsumerLabs which studies supplements exclusively so I value their info. And just came out. But whatever. I am aware melatonin has entered the main stream, so to speak, rather like aspirin these days so docs may be aware of it. And doubt 10 mg is going to make a major difference either way.
I understand where you are coming from on this. I too have experienced a dismissive response from physicians more often than I would like regarding supplements, alternative therapy and even mental health. But I also have encountered some very knowledgeable open minded physicians who have been very helpful. As a physician myself (married to a physician and with a physician daughter) I have noticed a difference in medical training today compared with when I went through with more focus on nutrition and metabolic approaches to disease. I don’t know everything about hematology as it is not my specialty but I do understand there are physiologic pathways to promote lymphocyte production without prompting CLL disease progression. Melatonin is known to promote T-cell growth (a type of lymphocyte) but I don’t see data that it promotes malignant B-cell growth. Again, I’m not a hematologist but this is my personal experience and perspective.
Insanity4578,
If you have any further information relating to your statement "I do understand there are physiologic pathways to promote lymphocyte production without prompting CLL disease progression." I'd love to learn about it. All approved CLL treatments unfortunately target healthy B cells as well as CLL cells. There is some selectivity in that some targets are less expressed or not expressed in different stages in the B cell life cycle, e.g. CD20 is down regulated in plasma cells and CLL cells over-express BCL-2 and BTK, so healthy B cells are less targeted. That we don't tend to provide worthwhile antibody responses to vaccines and boosters while under treatment, shows that this difference doesn't amount to much, unfortunately. There was hope that ROR-1 targeting therapies would spare healthy B cells, pmc.ncbi.nlm.nih.gov/articl... but ROR-1 clinical trials have proved disappointing. Likewise there was hope that lenalidomide (Revlimid) treatment would help improve the immune system in CLL patients, but again clinical trials have proved disappointing. The basic problem, which is relevant to melatonin, is that anything that influences the behaviour of different biological functions, will be challenging with respect to side effects. Nowadays, research pharmacologists have such a good understanding of kinases, that they can custom design a Bruton's Tyrosine Kinase to selectively prioritise for what's most important to patients, be it cardio-toxicity, bruising/bleeding risk, diarrhoea, etc. (See the attached graphic on binding kinetics for the kinase targets in different body cells; the red dots show which body cells are impacted, with the size of the dot indicating the percentage of inhibition and hence the likely degree of any associated side effects.)
Finally, with respect to supplement use to manage CLL, I suspect the most benefit may be in exploring synergistic effects with proven therapies and indeed patents have been taken out to cover these in cancer treatment, including for EGCG from green tea by Mayo Clinic. I agree with SeymourB healthunlocked.com/cllsuppo... that "What's needed is specific in-vivo research that cites dosages and effects". There are around 200 different blood cancers of which only a handful are chronic B cell leukaemias/lymphomas. The tumor micro-environment has such a huge influence on the effectiveness of CLL treatments, trying something on the basis of any less detailed, specific research, hugely reduces the likelihood of a favourable outcome. See healthunlocked.com/cllsuppo...
Neil
Binding kinetics of several BTKi drugs, showing varying off-target body cell impacts
Unfortunately I can’t offer insight into the challenge of understanding specifically targeting malignant B cells. I was just referring to the fact that melatonin increases the proliferation of T cells by increasing antigen expression on macrophages and triggering the normal immune response. So obviously the lymphocyte count would go up without much effect on B cells.
I do agree that more specific research needs to be done on things like green tea extract, high dose IV vitamin C, fasting etc. conjunction with standard therapy. Unfortunately, at least in the US, there is very little funding for this sort of thing (particularly in the current political environment) since most of our research seems to be funded by big pharmaceutical companies in their never-ending pursuit of capitalistic gains. Not much money to be made with these over-the-counter or very inexpensive known supplements.
Apologies for not having much to offer!
I dunno if you have seen this or not. Apparently CBD should be avoided with CLL
ashpublications.org/blood/a...
Conclusion
‘This study demonstrates that it is safe to administrate a single dose of Sativex to elderly patients with indolent B-cell lymphoma with regards to adverse events. We show that the cannabis compound quickly reduces lymphoma cell numbers in peripheral blood. There was no evidence of activation of caspase 3; this suggests that the reduction of lymphoma cells in blood might be due to redistribution from blood rather than apoptosis. We have also detected an apparent circadian rhythm of the peripheral numbers of malignant lymphocytes.
Our findings suggest that the drug might promote homing of lymphoma cells from blood into secondary lymphoid organs where they receive pro-survival signals. Therefore, this cannabinoid compound should be used with caution in patients with indolent leukemic lymphomas. Further studies are needed to dissect the signaling pathways affected by cannabinoids in B-cell lymphoma.’
Thank you. I had not seen this.
If I have a night of tossing and turning, I get up and take 5mg melatonin gummy. My doctor said he preferred it to a prescription for a sleep aide. I usually take it 2-3 times in a month. It’s enough for me and I don’t become sleep deprived. Sally
Can't imagine that's enough to be an issue either way. And if it saves you from more serious med, probably a good trade-off.
Vlaminck, as you know melatonin is produced naturally by the body and it can enhance mitochondrial ATP synthesis in the cells. The important thing is to stimulate natural melatonin production by the body. Such as getting direct sunlight early in the morning. I don’t take the supplement form very often, but if I am having difficulty getting asleep, I would take a very low dosage of 0.5 or 1 mlg of sublingual formula, it’s better to get some sleep rather than not getting any at all. We are all different, so you have to find what works best for you. Peace 🙏
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