Showing posts with label peripheral_neuropathy. Show all posts
Showing posts with label peripheral_neuropathy. Show all posts

Thursday, 7 June 2018

Cocktail review after 1 year

Dear community,

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. 

Friday, 12 February 2016

Effect of Disulfiram Administration on Rat Brain Glutathione Metabolism

http://www.ncbi.nlm.nih.gov/pubmed/8142069

This study is not about brain tumors, but it does show that oral administration of disulfiram to rats (12 mg/kg), which would convert to about 125 mg for an average adult using allometric scaling, is sufficient to decrease the brain levels of reduced glutathione (GSH), increase the levels of oxidized glutathione (GSSG), and thereby decrease the ratio of reduced to oxidized glutathione from 122:1 to 12.8:1.

I propose that this could be a particularly effective therapy in IDH1-mutant tumors, which already have lowered baseline levels of NADPH, reduced glutathione (GSH) and impaired antioxidant capacity.

I will add this study to the Library.

A typical anti-alcohol abuse dose for disulfiram is 250 mg daily (500 mg has also been used).  Watch out for peripheral neuropathy (pain, tingling, numbness in fingers, toes, etc.).

Saturday, 26 September 2015

Dosing DCA ,Disulfiram together

Please correct me if I am wrong.
So both Disulfiram and DCA cause neuropathy. I am trying to dose both.
DCA can cause memory problems and hand tremors and possible Korsakoffs syndrome which could be very serious and what  I am worried the most about. Of all the patients treated by Medicore they did not mention that side effect of DCA but in theory it is possible.
So this Korsakoffs is caused by not enough vit B1. 
Neuropathy caused by Disulfiram is caused by other mechanism  I assume and not by vit B1 depletion. CUSP 9 doctors are not supplementing with B1. 
In that case Disulfiram would never cause Krsakoffs or memory problems because it does not deplete vit B1. So dosing Disulfiram even if taken with DCA I wouldn't have to worry about heart failure, or memory problems. So even If vit b1 is low and I stopped DCA I can still give Disulfiram. Is that correct?

Sunday, 20 September 2015

DCA

Have been reading the DCA posts of negative effects of even small dosages of DCA.  I was starting DCA today at a higher dose as recommended by one of the group but now as rethinking as I read of these ill effects.  Does anyone know if these effects are reversible?

Also I am still trying to figure out the best way to administer the DCA - now that I've learned how to measure it.  Should it be in water, juice, with food, how?