Hello all,
I'm looking for information on DCA. My dad was diagnosed with an inoperable glioblastoma in December 2015. He's doing pretty well at the moment and we're happy with his treatment. But we want to be prepared for the worst case and that's why I'm interested in DCA.
We live in Germany and as many other cancer patients my dad is taking methadone as part of his cocktail. That's also my main concern because I couldn't find any information on whether methadone and DCA can be combined (I read that you need to be careful with cannabinoids which could be problematic as methadone uses the same receptors). My dad's tumor was stable for a year and then started shrinking in December 2016. As you can imagine we're extremely happy and don't want to omit any of the drugs he's taking at the moment:
- Temodar (still on 5/23)
- methadone
- Optune TTF
- dexamethasone (tapering 0,5 mg)
- Omega 3
- Vitamin D
- Levetiracetam
- Coriolus versicolor (PSK)
- broccoli sprouts
- Eliqius (blood-thinner)
If you have any information on the combination of DCA with our cocktail, please let me know. I'd also like to know whether you really have to be careful with the dosage in brain tumor patients. I read some really scary stories online, they said that the combination of DCA and caffeine was dangerous.
Thanks a lot!!
You're not likely to find much information on drug interactions with DCA, because DCA isn't an approved drug, so that kind of information isn't formally collected or reported.
ReplyDeleteNo suspected interactions of methadone and DCA come immediately to mind, and they have quite different mechanisms of action, the one working through opioid receptor stimulation, and the other acting as an inhibitor of pyruvate dehydrogenase kinase. Both drugs can reduce blood glucose, so monitoring that would be a good idea.
Those scary stories are the only source of information I've seen on the alleged DCA + caffeine interaction, and unfortunately I don't believe there's been a scientific investigation into this.
http://www.thedcasite.com/DCA_protocol/DCA_Tea_Protocol.html
http://www.thedcasite.com/DCA_protocol/Brain_cancer_risks.html
A more well documented risk of DCA is peripheral neuropathy, especially with extended use over months-years. Some people report it has taken a long time to heal from DCA-induced peripheral neuropathy (nerve damage in the hands/feet).
Also I'm very glad to hear about your dad's tumor shrinkage. I think this is the first case of a cocktail that included methadone on this blog, and it'll be interesting to hear more about his experience with it.
ReplyDeleteThanks so much, Stephen. How often would you recommend taking DCA? 2 weeks on/1 week off or 5 days on/2 days off? I think the first one might help more to avoid peripheral neuropathy. And how much would you recommend?
ReplyDeleteMethadone seems to be extremely promising. The facebook group I am in has more than 4,000 members and I've heard so many positive stories. From what I've read online it looks like methadone + chemotherapy can be used for all solid cancers. But according to our doctor it seems like glioblastomas respond better than other tumors. There's lots of information available online but most of it is in German. Methadone as we use it (to increase the efficiancy of the chemotherapy) has no serious side effects because of the low dosage. My dad's oncologist told us that he'd never seen such a positive outcome with an inoperable glioblastoma. Since December 2016 my dad has had 3 MRIs and all showed tumor shrinkage :) He'll have another one next month and I don't worry too much about it - so different from my dad's first year after his diagnosis.
The German media have discovered this topic and there's been lots of newspaper and online articles and TV newsreports on it. Finally it feels like something new and big is happening to treat this awful disease. Here you can find useful information in English:
https://www.gesundheitsindustrie-bw.de/en/article/news/methadone-the-last-step-to-becoming-an-anti-cancer-drug/
http://www.campus-technologies.de/wp-content/uploads/TO_UEE20120404Methadon-Short-1_.pdf
https://www.ncbi.nlm.nih.gov/pubmed/24626197
https://www.ncbi.nlm.nih.gov/pubmed/28314286
Thanks again for this greag blog!
I'm really pleased your dad is having such a good response, and maybe it is due to the methadone, or some combination of it and the other therapies he is using.
ReplyDeleteSeems like you're on the right track with what you're doing!
I remain cautiously optimistic about methadone. In the 2017 study you linked to, follow up of the patients was still rather short (maximum of around a year). The paper would have been more impressive with longer follow-up, or if they had published the details of some of the impressive individual cases, as reported in the news articles. Anyway, given the tolerability and the low doses required, and the reports of efficacy in individual cases, I certainly think it's worth a try.
Yes, you're right, we obviously don't know which drug helps my dad. Personally, I believe it is the combination of Temodar+methadone and Optune TTF that causes his tumor to shrink. But what matters the most is that it does so!
ReplyDeleteI'll keep you updated on our experience with methadone. And I've decided to buy DCA to be prepared for the worst case but ideally we might never need it :)
Hi Steffi,
DeleteWhat dosage is your Dad on for Methadone? Does he take it during chemo or for prolonged periods?
I am very interested in adding it to our cocktail.
Hi Jacki,
Deletemy dad takes 2x40 drops. You have to take it every day because your body becomes 'addicted'. Depending on where you live you have to make sure that that you get the right methadone (check Stephen's post) and it has to be liquid. Drug addicts often get a thicker version to prevent them from injecting it. But Dr Friesen did her research on liquid R-S-methadone (you need both forms).
And you can't start with 40 drops! You have to start on a really low dose!
DeleteWow, that's really nice result! Could you give more information about methadone please - dosages, you obtain it via prescription?
ReplyDeleteStephen, you have any idea how methadone compares to LDN?
Steffi - I'm just thinking out loud - did you maybe check about perillyl alcohol? There are some posts on this blog as well. Maybe another option besides DCA, in case there is a recurrence.
Some notes on methadone: the form in common use clinically and used in the glioma clinical studies published by Onken, Frisen et al. is a racemic mix, meaning it contains equal proportions of the levo and dextro forms (which are mirror images of each other).
DeleteLevomethadone (R-methadone) is a mu-opioid receptor agonist, while dextromethadone (S-methadone) is an NMDA glutamate receptor antagonist.
(Incidentally, NMDA glutamate receptors are implicated in seizure activity, and one reason patients with IDH1 mutant tumors are thought to be so prone to seizures is because of the structual similarity of 2-hydroxyglutarate to glutamate, and the activation of NMDA receptors by 2-HG.)
Low dose naltrexone mainly acts by causing the body to increase production of met-enkephalin (opioid growth factor) which is primarly a delta-opioid receptor agonist, unlike methadone which is primarily active at mu-opioid receptors. So methadone and low dose naltrexone are acting on different opioid receptor systems, and methadone (dextro form) has the added activity as an NMDA glutamate receptor antagonist.
https://www.ncbi.nlm.nih.gov/pubmed/7823756
The mu1, mu2, delta, kappa opioid receptor binding profiles of methadone stereoisomers and morphine
Hi Matjaz,
Deleteyou need a special prescription because methadone is a narcotic substance. And it can be really difficult finding a doctor who's willing to prescribe it. Stephen explained it very well, you need both forms of the methadone. Here in Germany it has to be prepared by pharmacies individually because it's not the same methadone drug addicts mostly use (I think they take the R-methadone).
According to Dr Friesen's research you need 2×35 drops (!). So you have to take it every 12 hours. And you have to start on a much lower dose because the body needs time to get used to the substance. It took my dad about 6 weeks to get to 2×35 drops.
I haven't checked about
perillyl alcohol yet, but will definitely do so!
It's really difficult to decide whether or not to add anything to my dad's mini cocktail. At the moment we're thinking 'never change a winning team' but I want to be prepared. So thanks for mentioning perillyl alcohol!
From what I can gather, (R)-methadone [aka levomethadone] is available in Europe, but not in the USA, where all methadone used is the racemic mix (R,S)-methadone aka D,L-methadone.
Delete"A proposed solution is the use of a form of methadone that contains only the (R)-enantiomer. This methadone formulation is available in the European Union and is in widespread use in Germany. The use of a pure (R)-formulation of methadone results in lower effective doses, but its cost is up to 20% higher than the racemic formulation"
"Some in the United States have suggested that racemic methadone be replaced by (R)-methadone. However, this formulation of methadone is not US Food and Drug Administration (FDA)-approved and, therefore, cannot be prescribed in the United States."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723395/
Thanks for the info!
DeleteHi Steffi, I'd like to get in touch with you if you don't mind. Could you please send me a line to szokeildiii@gmail.com?
ReplyDeleteHi, Steffi: Where did you buy methadone? Does it needs prescription? I want add methadone to my mother's cocktail list, But it is hard for me to find where I can buy
ReplyDelete