Hi, I am new here and I stumbled across this site whilst researching and thought this information may be of interest here.
I found this paper a while back whilst researching information about Waldenstrom's Macroglobulinemia (WM), I am currently taking Ibrutinib (Ibruvica) for this condition, which is a similar disease to leukaemia.
Although I have not tried this myself the use of THC to combat disease seems to show promising results.
Here is the link to the article.
Hi Khenet,
This paper is about a totally different ACUTE leukaemia with a specific chromosome mutation not present in CLL. The 14 year old patient had an overgrowth of malignant blast cells, which are not present in CLL. As the article states "ALL with a positive Philadelphia chromosome mutation". Hence the case study is not relevant to CLL. Our CLL cells just don't have that mutation, very rarely are blast cells present and the median age of diagnosis is 71, with very, very few diagnosed under 20. It's a totally different disease, with the only common factor being that it is one of the many B-cell blood cancers. Highlighting the difference in this blood cancer and CLL is that none of the conventional treatments tried in that case study are used to treat CLL.
There has been at least one encouraging trial which showed cannabinoids synergistically boosting the effects of chemo treatment on I think ALL, but CLL lacks the receptor pathways involved.
Neil
You are right it is a different disease.
What stood out for me was the Dr’s summary and the fact that the decision to administer thc was a desperate attempt by her parents to try anything to save their daughter after exhausting conventional treatment options.
Certainly forward thinking of the hospital to offer to supervise the treatment.
Thc’s impact on the disease is remarkable and therefor requires further research. Crowd sourcing could be an option because conventional funding channels can’t see a profit in healing disease.
Placebo/dispicable marketing/wonder drug!
Could be any or all of these things who knows for sure.
It’s certainly no panacea.
Many factors contribute to Good health, clean air, sleep, optimim diet, excercise, positive attitude etc
Therefore to neglect these aspects of health and expect modern medicine to fix you when you become ill is doomed from start.
However we are all responsible for our own actions so if anyone wants to try this that or the other for what ever reason then that’s up to them. Shame the drug laws around the world are so arbitrary. Perhaps the only way to know for sure is to try it out yourself and see what works for you.
I water fasted last year for 28 days to see if it impacted on my condition Waldenstrom’s Macroglobulineama.
But despite a major detox the condition continued to progress. However upon starting ibrutinib symptoms reduced sharply. Surprisingly I am experiencing only minor side effects from the meds and I feel this is due partly to the improved health achieved fasting.
I’ve drifted a little off topic so I’ll end by saying thanks for your reply and good health to you.
Crowd funding of a promising "natural" cure has already been done for CLL. Supporters of CLL Topics/Updates run by Chaya Venkat raised funds and went out to tender, eventually engaging the Mayo Clinic to run phase 1 and 2 trials using a pharmaceutical grade extract of EGCG from green tea, marketed as polyphenon-E.
The challenge with CLL is that the DNA mutation causes are complex and many. That's part of why it is still an incurable cancer. If there is just one primary mutation by which a cancer develops, then it is much, much easier to cure if you can find a way to inhibit that mutation. Interestingly, that's been the case with the Philadelphia chromosome in another chronic leukaemia - CML. The development of Imatinib/Gleevec turned CML from being an incurable blood cancer into one where those with the condition can healthily live out their normal life expectancy IF their CML is due to the Philadelphia chromosome:
en.m.wikipedia.org/wiki/Phi...
The difficulty with CLL (which wasn't understood when the EGCG trials were run), is that any treatment speeds the development of tougher to treat clones, so called clonal evolution. That's why the most promising research into curing CLL is currently with combination treatments. Theoretically, this should knock out any sub-clones with resistance to one of the drugs, so you don't get a small population of tougher CLL cells that gradually grows back.
Mayo Clinic saw value in using EGCG in synergy with drugs active against CLL and patented the combinations. The manufacturer of polyphenon-E decided to go after more lucrative markets. One of the principal researchers in the Mayo Clinic EGCG trials has publicly warned those with CLL not to take over the counter green tea supplements, because there is no guarantee of what's contained in them due to the unregulated supplements industry in the USA. That situation won't change until the supplements industry stops lobbying against legislation to improve the safety of what's sold. Meanwhile the size of the supplements market is quickly approaching that of the prescribed drugs market, with little evidence of benefit to most consumers.
Neil
Despite the fact this apparently has nothing to do with Cll, I feel like this is a treatment plan I can jump into with both feet. What to lose? I’ll do my own one person, double blind study gradually increasing the dose over time and report back to the group here in a few years. 🤛
Pretty tricky making it a double blind study, Jeff! Maybe just close both eyes while medicating. Keep in touch & let us know how it goes.
G-girl, I will let you know for sure. I will have to do it double blind to maintain integrity of the trial. Since it’s a one person trial, I’ll have to randomize myself to both arms, placebo on one arm, ganja on the other. Someone has to be the pioneer for us.
Seriously speaking, while I don’t see cannabis as treating Cll, I do see it increasingly used to treat some of the many symptoms associated with Cll, pain from nagging nodes among them. My state has recently legalized pot for medicinal purposes with only certain illnesses qualifying. I am reasonably certain having Cll would qualify. Jeff
I was given medical marijuana sbout 3 weeks ago for shoulder injury’s. I advised my SLL specialist and my Local oncologist about the use of it for pain. They had no issues with me taking it. I’ve read articles that it can slow the production of cancer cells. I don’t know if that’s true but my concern was I didn’t want it to make it worse. The Dr’s didn’t show any concern that it could make it worse
The poor girl really suffered before and during the cannabonoid treatment. 😓
I think a good name for the strain should be Novel Agent...
It would be good for the Federal government to open up dollars more to research before it is fully recognized. Cannabis will probably have good medical uses. But..
I have a friend who works at a dispensory. I have a feeling it has already gone down the supplement path. Cure all claims to make big bucks.
Maybe there could be a supplement/cannabis tax to fund independent research into their claims. Subsequently, revisions must be made to packaging and marketing if claims have no basis. Even Ted behind the counter cannot use anecdotal evidence. Are pharmacists allowed to?
Related article by Malcolm Gladwell:
In July 2015 I was using cannabis.
In November 2015. I relapsed from FCR. I am mutated and all good markers. No thx.
I would not generalize. Just like ordinary meds, different people respond differently to cannabis, which are no longer science fiction and taboo....there are many factors to consider, including quality of extract, type of material used, concentration etc...so just because someone says I took THC and it didn't do jack for me does not necessarily imply THC does not work or that it had caused harm...
I relapsed after 6 months of my original FCR and I didn't take cannabis...so go figure.
Best of luck,
Andrew
Interesting recently published overview of Chronic Lymphocytic Leukaemia and Hairy-Cell Leukaemia
On beta glucans (discussed but not instead of treatment!)
Does anyone know if the Indian pharmaceutical industry has good result in the treatment of CLL 17p?
Don't know if this info is out there yet, but I just wanted to share
This case study is on a 14-year-old patient diagnosed with a very aggressive form of ALL (positive for the Philadelphia chromosome mutation)
Very different from CLL, but certainly now that cannabis is legal in Canada, I expect we will get some interesting anecdotal stories, which might lead to further studies in CLL.
To date the CLL studies have had poor results, but never say never, perhaps THC combined with a novel agent might be of value.
~chris 🇨🇦