Is it ok to smoke marijuana or to take edibles with cll?

[Jessielab]

It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above?

Thank you.

[AussieNeil Partner Administrator]

Per the study ASH 2019: A Clinical Trial of Cannabis As Targeted Therapy for Indolent Leukemic Lymphoma, referenced in this post healthunlocked.com/cllsuppo...

"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."

So you might see your lymphocyte blood count improve, but only because compounds in marijuana are redirecting the CLL cells into your nodes and spleen, where they multiply.

Neil

[Jessielab in reply to AussieNeil]

Sorry to hear that but thank you for your time and knowledge.

[8pawsplusme in reply to AussieNeil]

I actually posed the question of cbd gummies to my Mayo clinic CLL specialist and he dismissed this finding. I see that the above referenced study is from 2019. Are there any more recent findings to corroborate this? I do think it is an important question as CBDs seem to be a go-to for so many of us.

[AussieNeil Partner Administrator in reply to 8pawsplusme]

The admins have, of necessity, needed to keep across the evidence for cannabis products with respect to CLL. There, the best evidence is for its purported pain relief and anti-nausea properties, but recently that evidence doesn't seem as strong as initially thought. I'm not aware of any more recent research and I presume your Mayo Clinic CLL specialist didn't mention any either?

See also my reply to sidesy below healthunlocked.com/cllsuppo...

Neil

[8pawsplusme in reply to AussieNeil]

Neil, I just wanted to thank you for your reply. It convinced me that, for me, it is just not worth the risk! To your question of whether my Mayo specialist cited any studies, that would be a NO! this is precisely why this cll community is so valuable!

[flipperj in reply to 8pawsplusme]

I also brought this concern up with my doctors and it was dismissed. May, might, could etc., is not a conclusion. My healthcare team advocates for cannabis to the majority of their patients as there are no legal concerns in my area for quite some time.

[SofiaDeo]

Smoking is terrible for anyone's lungs, let alone people susceptible to lung problems like we CCL-ers are. Even if studies came out showing marijuana or a component helps, you shouldn't smoke it, it would need a different delivery method.

[Jessielab in reply to SofiaDeo]

Thank you for your comments. Fortunately, I do not smoke. Hope you are well.

[SofiaDeo in reply to Jessielab]

Sorry I misunderstood, you said "smoking marijuana" so....unless you are using a vaporizer, one is still smoking it. Pipes or joints still put smoke particles and other debris on the plant in to your lungs.

My first hem-onc told me to never ever EVER *smoke* marijuana, it must be vaporized. He had a number of patients with awful lung infections, from drawing smoke containing pathogens deep into their lungs & holding it in. Marijuana is legal where I am at, my partner no longer smokes when he partakes. He has switched to a vaporizer so I am not exposed to even second hand smoke. He's really happy, since discovering a vaporizer has much less waste of the product compared to a bong or pipe or joint. So he spends less, it lasts much longer.

[Kingfish6 in reply to Jessielab]

Gummies, edibles, resins available instead. I've posted the question of smoking to my pulmonologist who helped when I had Covid pneumonia 3 years ago, response was we don't know. Haven't asked CLL doc. Neil's link is helpful.

[sidesy]

From what I read I think RSO would be more beneficial personally. Even from a sleep perspective it will give you 8 -10 hrs of total rest ...therefore recovery and ability to cope with any stress you may have. Two very important issues when dealing with most diseases. This type of natural medicine is rarely seen in any positive light. I see many reports on it ..quoted negatives. It's similar to what I see written about CBD too. I am not saying it cures everything but why not give it a try. See if it works for you. We are all facing many challenges / changes in our lives now so I think it's open season on how to beat it (as long as it legal of course).

[AussieNeil Partner Administrator in reply to sidesy]

Sidesy, while I acknowledge how very important good quality sleep is for our health, lacking any references from you, I obviously can't comment on them. From reading Rick Simpson's recipe, RSO contains more from the plant than commercial CBD oil extracts, but I'm not aware of any research that indicates evidence for the additional compounds potentially reversing the observed effects reported in the peer reviewed clinical trial report published in ASH, a publication with a reputation for reporting high quality CLL research.

A Clinical Trial of Cannabis As Targeted Therapy for Indolent Leukemic Lymphoma

ashpublications.org/blood/a...

It noted "A week after administration of the cannabis compound, all non-malignant lymphocytes had returned to baseline levels, but the clonal B cells had significantly increased (P = 0.011)"

and concluded "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.

:

"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."

I also do happen to know a bit about industrial chemistry and was rather concerned at Rick Simpson's cavalier attitude to solvent purity. He considered industrial grade solvents, as well those suitable for use in human consumption, to be adequate for RSO production, because of his belief that RSO would cancel out any adverse health impact from any impurities. Having had the professional experience of arranging a top notch Australian laboratory to analyse an industrial solvent I was investigating for potential cleaning use and learning a significant percentage of the solvent make up was an ingredient banned for such use in Australia, that rather shocked me.

The difficulty with cannabinoids and CLL, is that it's hard to know if their use is accelerating CLL progression, because any effects are largely hidden, without access to radiological scans and bone marrow biopsies. So my recommendation is that anyone investigating the use of cannabinoids, should carefully track their lymphocyte count, nodes and spleen for changes in tumour growth and redistribution as well as their haemoglobin and platelet results for trend changes.

Neil

[BooksellerGuy in reply to sidesy]

I see lots of RSO references, but where does one obtain this? In the US...

[SERVrider]

In the UK, possession of cannabis in leaf, resin or other form is a statutory offence so you'd be at risk of being cautioned for the first offence and nicked for any subsequent offences. Similarly, if you were driving, you could/almost certainly would be drug-wiped and if found positive for cannabis, then blood sampled and nicked for drug driving which could result in disqualification for up to a year and very difficult and expensive to get insurance once your licence was returned. Safest to avoid.

[FloridaGal2]

Our generation grew up with mj. I use it on occasion...water pipe with minimal use.

[Living2]

I've had CLL since 2020 and been taking Ibrutinib since 2021. I asked my oncologist about smoking marijuana and he said he'd have to do some research. Next visit he said he didn't find any information that said don't do it. So I've been smoking about 1-2 times per week since then. I've had no problems at all and my labs are all back in the normal range now. However, I only smoke at home and never before going in to the doctor; only after. I've tried RSO but couldn't function after taking it. I was soooo wasted and all I could do was sleep. Hope this helps. Good luck!

[Katie-LMHC-Artist]

Where I live cannabis is legal. If you get a medical marijuana card you can get it cheaper. I asked my oncologist who wasn’t opposed to edibles to help my nausea when I first started Acalabrutinib. I started with gummies. I knew enough to start with a half on a day off. Two hours later I went to take a shower. I thought I was in a spa!😂 Probably the best shower ever!!! 😂 It took awhile to feel normal. I’m aware it depends on the ration of what is in the edibles. Honestly, I still need my brain so I gave away what I had purchased and decided not to renew the medical card. I smoked enough pot in the 70s when I was a hippie girl!! We all have to make our own decisions for ourselves.

[DriedSeaweed]

If you lock your post it will not be public and more community members may respond.

I doubt it makes a huge difference.

But.. suppose you want to do a clinical trial at some point. What if you need it out of your system before you join? Or, can’t take it during the trial? I have never seen it as exclusion criteria but one day there could be as they do more overdue research on pot.

I don’t know the answer but maybe see if you can address dependency on it.’

I have anxiety for other reasons and I am dependent on sertraline. Society considers this more appropriate but I am finding it difficult to quit. I guess it is because I haven’t figured out how to do the hard work and address the anxiety head on. Just numb it with molecules for now.

[Newdawn Administrator]

Apart from medically prescribed marijuana which was introduced in 2018 in very limited circumstances, Cannabis remains a Class B controlled drug under the Misuse of Drugs Act 1971 in the U.K.

It’s necessary to make sure we point that out for our U.K. members as this has to be a key consideration.

Newdawn

[gardengirl80]

I started using marijuana edibles for insomnia a few years b4 I was diagnosed in 2019. I am mutated with no bad markers. My treatment with O and V began the end of September because my hgb was decreasing and reached 9.4, spleen was hard and quite enlarged...no palpable nodes or symptoms. My numbers are all normal now and my hematologist and I are very pleased with my progress. I am an 81 yr. old female.

[Smakwater]

Jessielab,

There are those who regardless of the evidences will either support or condemn the use of cannabis related products, this includes specialists. Those who perform the research actually are responsible to provide the credibility for the evidence observed and not the audience. Appreciated but not necessarily absolute in truth, perspective and opinion is still legal in our circle.

I know some who were in my trial claimed that they found it beneficial mostly with regard to nausea and in some instances sleep. However, when it came time to add venetaclax to the obinutuzumab, they were not allowed to add it because their Lymph nodes were still enlarged.

Bear in mind that the trial did not prohibit cannabis products, and those using them eventually attained the reduction in lymph nodes with extended treatment. When the lymph node size reduction was reached they were allowed to start the venetaclax, and to my knowledge everyone reached the Trial response goaL.

JM