I have been reading about the story of cannabis and its treatment on CLL. I will tell you why I am interested to know about this? since my wife is under W & W condition of CLL so I have been exploring different alternative methods so that I could stop her progression?
I hope some members or experts in this forum definitely may have experience with Cannabis on CLL? We live in Ontario, Canada.
We have an appointment with a hematologist only in Jun 2021 so we want to find some alternatives. I read reports that CBD oil, THC, as well as cannabis leaves are useful for CLL so I want feedback from you on this subject? Do you recommend taking Cannabis even under the W & W condition?
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Sagarcanada
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The URL above includes a science paper on cannabis versus CLL.
If cannabis were a good bet, I’d have tried it. Lots of members here would have done the same. The science says it does not work.
If you were asking about pain management, then I suspect the science and lived experience would be somewhat supportive of such use, in some cases.
Cannabis appears to have counter productive outcomes for CLL management.
If you want to research alternative therapies for CLL, you would do well to start by searching the posts in this forum.. You will find information here, just that, sadly, you won’t likely find a magic fix.
The general advice, wisdom and common sense is..
1. Enjoy life. Life is for living
2. Decrease stress in life.. difficult with this diagnosis, it takes time to come to terms with, variously.
3. Eat a balanced diet.. Here opinions vary! Some aim for a little of everything, some for a vegan diet, some for low fat, some for organic or raw (though with raw food, we have to be aware of our immune compromise.. sometimes cooked food is wiser, sometimes it is essential during neutropenia, if this arises, usually during treatment, or when nearing treatment)..
Me? I aim for low inflammation diet: avoiding seed oils, reducing carbohydrates, eating meat/fish with green leafy veg, good fats (olive oil, butter, animal fats, coconut oil.. the more saturated fats which don’t oxidise/go rancid so easily), and berries, with a little chocolate.. and a little wine etc.
4. Take regular exercise.
5. Aim to be a healthy weight
6. Buy relevant medical devices to aid rapid monitoring of health stats: - digital thermometer; pulse oximeter; maybe blood pressure monitor.
— start by becoming familiar with your normal low/high cycles of HR (heart rate), temperature, and blood pressure. By ready to check your blood oxygen anytime your heart rate is up, you feel poorly, etc — the latter has helped many spot the signs of COVID19 promptly.. the same applies with avoiding sepsis/escalating sudden infection rapidly..
7.? Take up hobbies and activities that will give satisfaction and good memories.
It’s a stressful time, dealing with this diagnosis.. takes time to come to terms with such a set of changes.. Most people hunt for remedies, thus most all such things have been discussed at great length on the HU forum. — this really is a good place to use the search facility, instead of searching google.
Reducing levels of stress, a less inflammatory diet, making sure levels of vitamins/minerals are good [I take a good quality multi vitamin, where I figure the B vitamins are as important as any.. I also have resolved a few symptoms of deficiency via diet.. there were signs of mineral deficiency visible in my fingernails.. my supplement contains zinc and trace elements, I take some magnesium citrate/glycinate and improved my diet; and i reduced carbohydrate intake, and quit seed oils.]
Hypnosis was the best step in finding deep relaxation, that and finding peace with my oldest inter-personal conflicts.
I know treatment costs are a worry for you in Canada; I don’t know what you can do to acquire better health insurance cover, if anything.
Shedman thank you very much for your response. We are giving her an iron tablet, Vit D , a cutoff sugar, and increasing the veggie diet. Do you suggest Vitamin B or multivitamins? Wishing you good health.
The good quality multi Vit I take is, of course, a broad spectrum.. it happens to include a iron, which I would ordinarily avoid, as my diet includes regular meat intake.. It also has lots of trace elements and all the B vitamins.. note the particular B vit compounds.. mostly better absorbed versions; in the UK this is better than most from shops and pharmacies, except some health food stores.
There is an argument that supplements are mostly a waste of money, that they are poorly absorbed, but each to their own.
I also take a good magnesium supplement.. but always share the regime with your haematologist, so that they know the specifics.
Veggies? I believe a lot of good comes of eating ‘the whole animal’ - that is, I eat chicken/lamb/etc liver.. a powerhouse for nutrition compared to steak/chicken/etc etc.. and I eat it with herbs and mostly green veg alongside it.. and I learned to avoid foods that don’t sit easily with my stomach/alimentary canal..
As CLLer’s tend to take more than our fair share of antibiotics over time, especially as our condition worsens, then during and after treatments, I feel that a diet of limited carbohydrates is wisest: it avoids giving too much food for potential fungal infections and such as SIBO (small intestine bacterial overgrowth)..
I agree with every thing Shedman said. I tried CBD oil when first diagnosed with CLL to increase my appetite and better sleep with night sweats. According to sales claims, cannabis will cure just about everything, but for me it was a waste of money. Eating healthy balanced diet and moderate exercise has helped me the most. Blessings.
I'm newly diagnosed with cll/sll after 5 years of dealing w/triple positive breast cancer that is, supposedly, in remission after a year of oral chemo & a double mastectomy.
Since surgery(3+ years ago) my wbc immediately went up to 12,000 and some lymph nodes have remained enlarged). My oncologist/hematologist was watching it but a few months ago (after a year of no lab work) my wbc was 75,000 & I was diagnosed cll/sll.
What I'm looking for is any info that explains why cannabis could have a counter productive outcome for cll.
I've been vaping small amounts of organic hemp & cannabis flower because I used vaping to stop taking ativan. It does help w/pain, depression, anxiety & relaxation but don't want to use the cannabis if it could be counter productive.
My wbc is 85,000 but did not go up in the last month at all & the only changes were
that I've been having bad allergies (juniper & ragweed) and stopped vaping as well as my daily hiking.
Trying to determine if there's anything I can do to halt progression because my current oncologist is wanting to start me on a treatment plan of venetoclax & ibinutuzumab (because of the genetic and other stuff that they determined from my flow cytometry,etc)and I'd rather put that off as long as possible if possible.
Any help/info greatly appreciated as well as any sources of information where practitioners actually look out of the box...
There are ways to search this forum.. trust that there has been a lot of researches that looked outside of the box. There really seems to be little to no magic..
Best approaches tend towards: healthy diet, exercise, avoiding stress, getting good sleep, having expert CLL consultant on your team.. there is also option for free 2nd opinion for those in the USA.
The basis for treatment is of the mix of blood counts, pain/fatigue/quality of life, and oft most of all, haemoglobin/red cell count decrease indicating how compromised (filled with CLL cells) is the bone marrow..
Much in your favour is that you are being offered one of the latest treatments, with every chance it gives you longest deep remission.. your consultant should have explained the basis of their thinking it best to start treatment soon: what is their reasoning?
Due to their reported guidance, I must suspect that start of treatment is indicated. My full sympathy to you for, if you are anything like me, after so much medical treatment already you'd really like a lot less for a very long time.. at least, I got weary of treatment, despite it being life-saving, inside of 1 year.. But if expert consultant says my time for treatment is now, I'd gather myself, check they mean it and why, and go along with an up to date advanced treatment as necessary.
Good luck.
AussieNeil's reply to the original post (of this thread) shows some evidence of adverse impacts from cannabis use.. worth a read of his reply.
Thank you so much for the speedy reply Shedman. And an extremely informative read. I've got a lot of questions coming-up and am grateful to have found this group so I can start searching around.
My consultant is very pro medical cannabis but now I'm cautiously skeptical & taking a break from vaping.
Now actively looking for ways besides yoga, walking, knitting, breath-work, etc (that I have always & still do daily) to help dealing w/daily anxiety, pain & depression.
How do you get the 2nd opinion in the US? If I can, easily, do that by faxing a Dr. my pathology that would be helpful before starting treatment.
In the US, you are able to get a free second opinion via a video appointment with a recognised CLL specialist through the excellent CLL Society's Expert Access program cllsociety.wpengine.com/pro...
You haven't shared the references you found about "CBD oil, THC, as well as cannabis leaves are useful for CLL", but you do need to be aware that as discussed in this post, healthunlocked.com/cllsuppo... , there are compounds in cannabis that might give the illusion of improving CLL, while actually worsening the tumor burden. As I pointed out in my reply to that post, the paper concluded "Our findings suggest that the drug might promote homing of lymphoma cells from blood into secondary lymphoid organs where they receive pro-survival signals". which is exactly what you don't want, and hence "Therefore, this cannabinoid compound should be used with caution in patients with indolent leukemic lymphomas".
With regard to the likelihood of cannabinoid compounds actually causing CLL death, this paper, Cannabinoid Receptors Are Overexpressed in CLL but of Limited Potential for Therapeutic Exploitation, from PLOS1, June 2016: journals.plos.org/plosone/a...
notes in the Discussion section: "While we did find that cannabinoids reduced viability of CLL primary cells considerably independent of CNR mRNA expression, we found healthy cells to be affected to the same degree. Thus—and in contrast to other malignancies—our data suggest cannabinoids to be of poor therapeutic potential for treatment of CLL although CNR1 mRNA expression could be determined as novel prognostic marker. Their role in CLL notwithstanding, cannabinoids may still proof useful for anti-tumor therapy in other, selected hematologic malignancies and solid tumors in which the potential of cannabinoids will have to be studied accordingly."
I know of one small clinical trial where cannabinoids were used to synergistically enhance the performance of a proven acute leukaemia drug, but as there are around 200 different leukaemias/lymphomas, you need to specifically look for CLL related evidence. While you have done this, I don't know how reputable your sources are and there's been a huge amount of hype around cannabinoids and cancers.
The best evidence for the effective use of marijuana derived compounds with CLL appears to be in controlling pain and nausea during treatment when standard remedies aren't effective, but even then you need to be aware that CBD oil is a potent inhibitor of CYP3A4, so it can interfere with BTK inhibitors, which are now the most commonly prescribed CLL drugs, (Acalabrutinib, Ibrutinib, etc), along with other prescription drugs used with CLL management, including prednisone.
All new drug molecules need to "start" from somewhere. The anti-cancer medicines in this report were derived from cannabis, but have been modified. So it's nothing present in cannabis itself. Dr Liu said: “It is important to stress that these cannabis-like substances are far removed from the cannabis that is smoked. These novel compounds have been specifically designed to be free of the psychoactive features, whilst maintaining anti-cancer action. Ultimately, understanding the fundamental mechanisms of these compounds will provide us with insights into developing new drugs that can be used to effectively treat cancers.”
SofiaDeo explained the very important fact that the study mentioned concerns derived, modified molecules from cannabis THC. This is commonly done for a number of reasons, such as reducing toxicity, or improving absorption, selectivity and hence potency. With the THC precursor, the modification probably reduces the psychoactive effect. If THC was active against CLL, you would probably face difficulties getting a high enough dose to achieve any useful anticancer activity without being dangerously stoned.
Disappointingly, I wasn't able to find the original paper, as this statement intrigued me. "Further, Dr Liu found that the mechanism of cannabis may be independent of the presence of receptors – proteins found on the surface of cells to which other signalling molecules bind. Binding of molecules to receptors elicits a response in the cell, be it growth or death. The finding that cannabis action may not require the presence of these receptors introduces the possibility that the drug may be used more widely as the cancer cell’s dependence on the cannabis receptor is removed."
Frankly, I'm puzzled how you can achieve selective activity against cancer cells without targeting receptors or internal pathways specific to the cancer or at least the originating body cell. The history of anti-CD20 monoclonal antibody and Bruton's Tyrosine Kinase inhibitor drug development is relevant here. Even third generation versions of both of these drugs come with adverse event risks from off-targeting of other cell types. We also still haven't found a way to just target CLL cells while leaving healthy B cells and some other body cells untouched.
Irrespective, there are two other reasons why this research probably isn't relevant:-
1) It's been 15 years since the paper was published and I'm not aware of further related research
2) More importantly, the article doesn't mention the specific leukaemia studied. Initial research into promising cancer drugs is done in vitro against well characterised cancer cell lines purchased from companies that grow these. CLL cells are very hard to grow outside of the human body, because they rely on the supportive micro-environment found in lymph nodes and bone marrow. They are dormant in the blood and very easy to kill, being more fragile than health B-lymphocytes. It's very rare to find research using CLL cell lines, with other leukaemia cell lines generally used. Even if that is successful, most positive in vitro results nearly always end up with disappointing results when tested In Vivo, because of (a) the difficulty of achieving a high enough serum level of the active ingredient without causing adverse events and (b) the CLL cell micro-environment in the body protects the CLL cells.
I admire your efforts trying to find alternative treatments for your wife, but I support the more certain suggestions of others to improve her health with CLL.
Thank you Neil for your insightful information. I wanted to verify the claims so I put the arguments. Your information is a great source for me. All the best.
Neil, perhaps it depends on what is meant by a 'receptor', but it seems that if a particular metabolic pathway was operative in one cell type, but not in another, a metabolite could target the pathway and block it without a receptor being involved. I'll have to think about this a little more. 🤔
Sagarcanada, I know that you are very concerned about your wife. Please take the advice of Shedman and help her focus on a healthy lifestyle instead of searching for unsupported therapies.
The work of Dr Liu, who is quoted in the article that you cite, does not involve CLL.
I’ve found 4 publications co-authored by Dr. Liu reporting on the effects of cannabinoids on one or more of the following cell lines, none of which are related to CLL: CEM (acute lymphoblastic), HEL-92 (erythroblastic), HL60 (acute promyelocytic), and MOLT-4 (acute lymphoblastic) leukemic cell lines
1. Cannabis-induced cytotoxicity in leukemic cell lines: The role of the cannabinoid receptors and the MAPK pathway. Blood 105: 1214-1221, 2005.
2. Enhancing the in vitro cytotoxic activity of Δ9-tetrahydrocannabinol in leukemia cells through a combinatorial approach. Leuk Lymphoma 49: 1800-1809, 2008.
Gardening-girl, Thank you very much for your insightful information. Now I am more clear about this topic. I really appreciate your feedback as it is amazing. I wish you good luck. God bless you!
All of us are trying to find something that would help us to stop or slow progression. That is totally understandable. If possible, try to think about the question in a different way too. Instead of trying to find something that can be taken to manage the condition like a supplement, juice or cannabis, think about what you need to avoid to manage it, like avoiding smoking, heavy drinking, highly inflammatory foods etc. If there is anything you can clean up in the current lifestyle including exercising more, loosing some weight etc. those would be worth to try. Anything that makes her stronger and feel better will be helpful even if in an indirect way, by improving quality of life.
Thank you very much LeoPa for your response. We have cut off such foods and giving mostly a veggie diet especially juice from beetroot and carrot with probiotic yogurt. We are still exploring more alternative ways. All the best!
Several years ago I tried Rick Simpson cannabis oil. This is high concentration THC that you use as suppository to bypass the liver. It did send my CLL out of control and I end up in hospital needing blood transfusions and high doses of Prednisone. Now I used small amount of cannabis for pain relief before going to bed.
So glad you added your experience with cannabis oil. Biggest problem with any over the counter remedies is dosage. "if a little works, a whole lot works even better", line of thought. Doctors spend years working out acceptable dosage for their prescriptions. Blessings.
Pragnar, Thank you very much for sharing your experiences.
My take on the medical uses of Cannabis. It is marketed for its medicinal properties. But mostly a as ll hybrids have been genetically altered to increase the THC content. While this will definitely give you a great buzz it has little to do with reducing symptoms or curing any other mental/emotional symptoms. Dosage of THC does not seem to be a concern for this effect within the industry. So if you wanna get high it’s your body and life. Just be realistic and treat it like your favorite alcoholic beverage. In moderation it can relax your mood from the stress of the day and increase the enjoyment of fellowship of other relaxed people. Just like a totally bussed person and a sloppy drunk are both poor company who are ultimately doing self harm. All the active compounds are present in hemp. These individual compounds need to be isolated and studied to determine their value as a treatment for disease and symptoms of disease. Then finding a safe and effective dosages that result in better outcomes then what currently exist.
Not all the active compounds are in hemp. Hemp has very little to zero THC as well as CBD. That's why hemp products aren't controlled. And why hemp-based CBD oil products are largely a scam. Very few manufacturers do studies to verify the presence & amount of active ingredient.
Hemp and Cannabis plants are closely related. Hemp historically has been genetically engineered to produce long, tough fibers for rope and cloth. Cannabis has been cultivated for its mood altering properties. Both species contain the same profile of alkaloids but in different amounts. Recently both species have received considerable amounts of genetic manipulation and improved plant management techniques to increase both the types of alkaloids and amount that a plant will produce. A viable and legal way has always existed to isolate and produce commercial quantities that allow for the isolation and study of these compounds. The missing elements for hemp is money and a poor image for anything but it’s fibers. Cannabis has a public image as an illegal gateway drug. But Cannabis has always had money. That money is so great that it has bought our politicians with the promise of great tax revenues and a scribed image as a medicinal miracle plant. Both are true however the money also is currently connected to the THC content which has risen in all the stuff sold from historical levels of 3-5% up to 30-35%. So the pitch is medical but the sizzle is the high.
I am more in favor of Cannabis as a cultural drug than alcohol or Tobacco. The parallels between Tobacco and Cannabis are however striking in how they are being manipulated as a product to for profit and the harm that this manipulation will cause long term.
The next time you go buy some gummies to reduce your joint pain ask your product expert to tell you specifically which Alkaloids reduce this type of inflammation and which product has this with THC content less than 10%.
Try and get something other than anecdotal evidence. When you get,” this high ...bla bla bla”. Remember Vodka is cheaper and comes with all the bullshit removed.
I prefer high Indica strains for pain, as opposed to high Sativa strains. I feel the Sativa gets me "high" and dries out my eyes plus makes me very lethargic. I don't like it except at bedtime, and even then only a tiny bit because of the dry eye, dry mouth. Indica doesn't seem to do that as much. And I love love love my CBD oil, it really helps with the pain. I am not taking any right now because of its' liver enzyme inducing properties. I need to get stable on Venclexta and the simvastatin before adding another liver enzyme affecting drug into the mix.
Larryll Thank you very much for your insightful information about Cannabis and Hemp. I am thinking to buy gummies to reduce her joint pain but I afraid it may have other side effects?
You are right to be cautious, per the research GardeningGirl and I referenced above, in particular the HU post I referenced, which discusses evidence that cannabinoids drive CLL cells into the nodes from the blood supply. You might think the CLL is improving, but you are probably increasing the tumour load where it actually grows!
It may prove problematic to find an effective dose for joint/muscle pain with gummies. Arizona recently legalized recreational marijuana. My daughter, thirty years old, bought some for recreational use. Her past experiences were limited to her University years. She ate one and said she was a zombie for hours. She tried a 1/4 and had a pleasant experience. The people on the other side of the counter are not pharmacists and their prescriptions are based on anecdotal experiences that are often word of mouth and not their own. These experiences are not yours or likely even those of people with similar circumstances. So go very slow with very small dosage. If nothing else you will have a pleasant couple of hours. There is a reason for using double blind experiments to validate results. It take the,”I think “, out of the conclusions. When ever I hear someone say , “I think “. I say, After M.Renee’ Descartes”.
Antidotal in Colorado. From one blood draw to the next WBC went from 72 to 56 when high THC edible was introduced in an uncontrolled manner. Before next draw usage of a lesser THC regime but a consistent daily usage resulted in a 60 WBC. Within six months WBC ballooned over 200 and BR chemo was instituted. I am consistent to the point of boredom so introducing cannabis into my system was the only change and my belief is the cannabis retarded, if only for a year, the necessity of treatment.
It is now five years since chemo and I have been self treating with high THC edibles (50mg) almost daily. Ugh, I don’t recommend that level for anyone, nor do I recommend cannabis usage at all for others. After chemo my WBC was as low as 0.7 and has slowly climbed to the latest 4.1 finally making it to the “normal” range.
I agree with Shedman that taking care of the body is the most effective approach. I have relied heavily on my personal trainer to prepare me for the long struggles involved; strength in body, mind, and spirit takes me a long way in my fight for survival.
To better determine if those changes slowed your progession, rather than just changing the CLL tumour distribution from blood to nodes and bone marrow, then back to blood, resulting in your WBC ballooning to over 200, you need to track the changes in lymphocyte count and also try and determine if there have been any changes in your spleen and node sizes and bone marrow infiltration. As I mentioned above, "...as discussed in this post, healthunlocked.com/cllsuppo... , there are compounds in cannabis that might give the illusion of improving CLL, while actually worsening the tumor burden.
You can infer changes in CLL bone marrow infiltration by trends in red blood cells/haemoglobin and platelets.
You are doing well 5 years after BR. Long may that continue.
Absolutely agree, I was just trying to keep it simple for the larger audience with the ubiquitous WBC counts. The experience wasn’t nearly as simple and direct as I implied. Recounting our travails in a quick blurb is hardly adequate. I was just trying to keep the door open to the possibilities of alternatives.
Yes, and we also need to remember that our counts may also occasionally "go down" because of a die-off from a previous "lymphocyte growth spurt". I had this happen last December (at least, that's what we think, no way to prove it). 3 weeks after stopping treatment, my counts went from around 180K to 110K. Spleen didn't seem to get any larger. I hadn't had a CT so we don't know about internal nodes, but my external palpable ones didn't seem any larger.
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