I'd like to revise my husband's cocktail after 1 year of doing this protocol. He is at 14.5 months from diagnosis and has just started his 12th cycle of TMZ and just got his 3rd excellent MRI saying that the main part of the thalamic tumor is barely visible at the moment (which was the bigger concern of the two tumor sites) and the frontal one is still non-enhancing.
Although he is methylated, I attribute the good results to the cocktail approach or at least to the synergy between the chemo and the cocktail because the first MRI after radiochemotherapy showed progression and it couldn't be pseudo progression, at least not on the frontal site because only the thalamic site was involved in the treatment.
We're reaching the 1 year mark of supplementation with the following:
Fluoxetin 40 mg
Chloroquine phosphate (Delagil) 250 mg (he already stopped taking it)
DCA 500 mg 2 times a day for a patient who is sadly weighs only 55-58 kg these days
Silymarin 630 mg
Celebrex 400 mg
The rest of the meds were added later on gradually.
In your opinion, is it good to stick to the cocktail if it's working because we don't know what elements are working or after a year would it be wiser to make some changes in the regimen to disturb the tumor?
Does it make sense to take Celebrex if there's no edema and we are 1 year from radiation therapy?
I'm thinking about replacing DCA with the ALA + HCC protocol.
Sorry if it was discussed before but is LDN an antagonist to methadon? Can the ALA + HCC protocol be effective without LDN? Combining this protocol with ketogenic diet is not an option for us because he has a sweet tooth and these days his main calorie intake is from fruits and baked goods which makes me frustrated big time but I can't help it, he lost so much weight.
I'm not sure if we can use 800 mg of ALA 2 times a day instead of RLA 800 mg 2 times a day or should we double the dose of ALA considering that ALA is just 50% RLA.
What's the longest period of time that a patient can take DCA? My husband is on a fairly low dose although he noticed considerable neuropathy on several occasions when we ran out of methadone for one day. Since it has painkiller effects I suppose that the neuropathy is continuous but methadone may conceal DCA's side effects. So I suppose that after a year we should address this problem and make at least a longer break of DCA.
Since his seizure he is on 300 mg of valproate acid 3 times a day, too. Considering that it became a necessity to take an AED I see reason to maybe replace fluoxetine with LITHIUM and so he would be taking almost the whole CLOVA cocktail. He's been on cimetidine 800 mg since last Sept./Oct. I'd like to exclude olanzapine because I read terrible things about its side effects but this way he is already taking 3 of the 4 medicine of the CLOVA cocktail anyway.
By the way, at first, he was prescribed the same amount of sodium valproate in the A&E but the NO changed it to valproate acid later on. I know that those two are in the same family but can be any difference between their tumor-fighting properties?
I read here an older comment that stated that a patient's NO advised against taking Silymarin and valproate together because valproate is metabolized by the liver and Silymarin flushes it out. Is it a true statement in your opinion? I'm not sure if we can keep that in the cocktail.
Cimetidine: I suppose it's advisable to take it together with TMZ. In our case it will be 24 cycles if he can tolerate it on the long term. So should he continue it for an additional year?
If stopping with DCA, Celebrex, chloroquine, he will only take a few prescription drugs (metformin, fluoxetine or lithium, alfacalcidol, D,L methadone and of course the anticonvulsant) and it seems a bit scary that natural supplements will be predominant.
Do you recommend to add anything to this list at this stage of the disease?
Thank you for your inputs in advance! I think I would be a complete nerve-wreck if this blog did not exist.
1. My mom takes DCA for 5 months 10mg / kg / BID (2 weeks / 1 week). I read the reports on the treatment in which people took DCA for several years without special side effects.
ReplyDeleteAgainst peripheral neuropathy, we take vitamin B1, Acetyl L-Carnitine and R-ALA.
Acetyl L-Carnitine we take in this supplement, which also contains many other:
https://ad.iherb.com/pr/Advanced-Orthomolecular-Research-AOR-Advanced-Series-Mito-Charger-180-Veggie-Caps/74800
2. Together with DCA, my mother has been taking Hydroxycitrate (2x500 mg / TID) and R-ALA (800 mg / BID) for 5 months already.
https://ru.iherb.com/pr/Solgar-Hydroxy-Citrate-60-Veggie-Caps/48586
https://ru.iherb.com/pr/Life-Extension-Super-R-Lipoic-Acid-240-mg-60-Vegetarian-Capsules/9824
In April-May 15 days instead of R-ALA (800 mg / BID) we made droppers ALA (600 mg / day).
The weight of a body has strongly fallen - from 67 kg to 51 kg. But we are also on a ketogenic diet, so I do not know exactly what this is related to.
3. Bakery products are probably very undesirable. There are many recipes from the keto diet: keto-bread, keto-biscuits, keto-cakes, even keto-ice cream. To the taste - almost no different from the usual. We cook all the dishes ourselves.
Every day we measure the level of glucose in the blood and ketones. As I understood, the target level of glucose is 3.6-3.8 all day. Bakery products are likely to increase the level of glucose.
Hi Semyon,
Deletethank you for your quick response and recommendations.
Our problem is not really the neuropathy itself, rather the fact that we don't have a chance to monitor it because we can't pause methadon. It happened maybe 3 times since last October that he missed taking the morning or evening dose of methadone for 1-2 days because of "supply issues" and then he noticed the typical weird sensations in his feet. I'm just afraid that after stopping methadone (that we are planning when he finishes chemo) we'll realize that it's barely reversible.
I personally am interested in keto diet but I think my mother-in-law would kill me if I tried to force his son into any diet :) The other thing is that in my opinion the only way a diet tough like this can be achievable in the long term is if the partner or rather the whole family also gets involved in it but as much as I would love to, I think we both would end up miserable because we are so skinny already. We use sugar substitutes anyway but I suppose the tricky part is actually the amount that you eat because I guess that even a keto cake can take you out of ketosis if you eat 5 pieces of them and it's just so hard to say no to a loved one with a life-threatening disease who's been skin and bone lately. But kudos to anyone that is able to stick with ketogenic diet. By the way, one of them is this 21 year old young man who is a 2 year GBM survivor. He "only" does keto and several supplements. He also makes a living with his vlog and with selling personalized workout plans and meal plans. Total inspiration. You might want to check it out his vlog for new recipes:)
https://www.youtube.com/channel/UCoQ9JsZw8RT8w6uqDmq12Hg
I think I'll try to push him to at least try keto if we'll be lucky enough to get through the 24 cycles of Temodal and his overall well-being will be less compromised than recently.
There are no right answers, but one source of guidance is to look at what people who've had success with the cocktail strategy have done.
ReplyDeleteFor example Rich Gerber, the main contributor to the previous incarnation of this blog at Cancer Compass, kept the core of his cocktail going for about two years.
https://cancercompass.com/message-board/message/all,74411,1.htm
This cocktail included chloroquine, cimetidine and Celebrex, all of which he continued taking during the year of chemo, and for nearly another year after finishing chemo.
I would probably not change it up too much if he's tolerating it well.
Naltrexone is an opioid receptor antagonist, so yes it would in theory interfere with methadone, although low dose naltrexone would probably mean less interference than standard dose naltrexone. I'm not sure that low dose naltrexone would even work as intended if also taking methadone. The point of LDN is to create a temporary blockage of opioid receptors causing the body to compensate by overproducing met-enkephalin, and I'm not sure how this would turn out if a person was also taking methadone. They may be non-complementary strategies.
A person could probably take DCA until unwanted side-effects forced a discontinuation. Neuropathy with DCA can be serious and it may take a long time to recover from it. I would probably discontinue DCA until there are no longer symptoms of neuropathy.
What are the brand names of valproic acid and valproate he is taking? Depakote is most commonly used in North America, which is 1:1 mix of valproic acid and sodium valproate. Uncoated sodium valproate rapidly dissociates to valproic acid once it gets to the stomach, so you end up with valproic acid anyway, even when you ingest the sodium valproate form.
Most drugs are metabolized in the liver. Milk thistle is protective against liver damage and stress, perhaps by increasing rate of protein synthesis and cellular repair after injury, according to examine.com
https://examine.com/supplements/milk-thistle/
Milk thistle can actually protect against liver damage from too long or high dose valproic acid. https://www.researchgate.net/publication/320921287_Protective_effect_of_silymarin_and_ascorbic_acid_in_valproic_acid-induced_hepatic_toxicity_in_male_albino_Rats
Extensive drug cocktails are in themselves probably hard on the liver, especially when staying on them long-term, and milk thistle/silmarin could help keep the liver in good shape and prevent hepatotoxicity.
I appreciate your taking the time to answer to all my questions.
DeleteCongratulations on your success thus far! I can't speak to the content of the cocktail but i can say that we found that Alpha Lipoic Acid eradicated painful symptoms of neuropathy. You can buy it from Amazon.
ReplyDeleteI also congratulate you on your success and determination! Like your husband, I also have sweet tooth...there are some sweets and chocolate with stevia sweetener, which doesn't raise blood glucose. I especially like Cavalier chocolates and hazelnut spread, which I like even better than Nutella :)
ReplyDeletehttp://www.cavalier.be/epages/Cavalier.sf/en_GB/?ObjectPath=/Shops/Cavalier/Products/SCC1150EA
Thank you for your kind words Matjaz. For some strange reason the only sugar substitute that he doesn't want to eat is the only healthy one, stevia. He smells and tastes it even in the most delicious cakes and refuses to eat it.
DeleteIt's so interesting that during radiation therapy he instinctively had an affection to healthy foods, he ate some kind of a semi-keto diet (not on purpose) with nuts, fish, pork fats, tons of greens, tofu, almost raw broccoli and cabbage and the only fruits he wanted to eat on rare occasion were berries which is acceptable in keto, too, as far as I know. Anything else was too sweet for him. Now, the exact opposite. No veggies, very moderate protein-intake but mostly a huge craving for baked products and fruits. I hope his taste buds will get back to normal after finishing TMZ.
Naltrexone is an anti-dotum for Methadon and other opioids. Combining both seems not logic.
ReplyDeleteCan you please tell me where you get your DCA?
ReplyDeleteWe use that company: https://www.dcalab.com/
DeleteAlso tried Pharma DCA but eventually we sticked with DCA Lab.
https://pharma-dca.com/
ReplyDelete