I started my coctail on the 2nd of July, then added DCA on the 12th of August at .8 mg/kg, so i have been doing .5 mg once daily.
Starting September, 3, I began experiencing shaking in hands and head. My balance is way off, I cannot drive anymore. Occasionally, when I play with my daughter, I fall on the couch or something else just because I lose balance when moving among things. I have to hold onto walls when I walk, especially at night.
Also, what surprised me, is that I talk and make movements with my hands before falling asleep. Right at the point of being between here and there, I may dream of something (like sewing a button or petting my cat) and start making these movements or/and saying separate words. This has never happened to me before.
My last MRI on the 11th showed almost no signs of tumor and no new growth in other parts of the brain. I have nothing but meds to blame, particularly DCA. Or do you think I am steadily declining due to everythng else - tumor, surgery, radiation, chemo? I thought I was recovering pretty good, but now I am at the point when I quickly started making some arrangements and finish things I haven't yet finished because I thought I had at least a month or two to go.
Starting September, 3, I began experiencing shaking in hands and head. My balance is way off, I cannot drive anymore. Occasionally, when I play with my daughter, I fall on the couch or something else just because I lose balance when moving among things. I have to hold onto walls when I walk, especially at night.
Also, what surprised me, is that I talk and make movements with my hands before falling asleep. Right at the point of being between here and there, I may dream of something (like sewing a button or petting my cat) and start making these movements or/and saying separate words. This has never happened to me before.
My last MRI on the 11th showed almost no signs of tumor and no new growth in other parts of the brain. I have nothing but meds to blame, particularly DCA. Or do you think I am steadily declining due to everythng else - tumor, surgery, radiation, chemo? I thought I was recovering pretty good, but now I am at the point when I quickly started making some arrangements and finish things I haven't yet finished because I thought I had at least a month or two to go.
My brother has hand tremors, we think from dca. We stopped DCA and are supplementing with b1. We are planning to get benfontiamine instead. I don't know if it will help.
ReplyDeleteInteresting about B1. Isn't it tiamine=Something found in black tea?
DeleteJust to clarify on the dosing, are you doing 8 mg/kg once daily, which would be 500 mg (0.5 grams) for a 60 kg adult? This is pretty low dose. That is a dose many people are doing twice daily, rather than once.
ReplyDeleteHave you talked to a doctor about these symptoms?
That is correct. I was hoping to start with a low dose and increase it every month.
DeleteMy NO does not know I take DCA and coctail, he is opposed to it, so I did not even start.
He cannot say anything about these symptoms either, just wait and see approach, like always.
5 mg/kg twice daily is though to be safe, even for slow metabolizers:
ReplyDelete"Specifically, patients who lack an EGT allele [of the GSTZ1 gene] should
probably be treated with a starting oral dose of 5 mg/kg/12 h
that can be increased, based on absence of peripheral neuropathy, whereas subjects who possess at least one EGT allele
should tolerate doses at least 6.25 mg/kg/12 h"
http://www.ncbi.nlm.nih.gov/pubmed/24297161
Still, even though the daily dose is low, DCA could be causing some of these symptoms. Hand tremors is listed by Medicore Cancer Centres as one of the potential side-effects of DCA.
ReplyDeleteWe were on a similar low dose, and after two weeks the liver enzymes ast and alt were ten times higher than the normal upper limit. In our case a low dose caused an extreme side effect. Amber I hope this is just the dca, and reversible. Have you stopped taking it or are you still on it?
ReplyDeleteThank you for your input!
DeleteYes, I stopped taking DCA but because I ran out :) So three days without it, balance issues keep escalating.
Amber, when was your last MRI? There are other reasons to have balance issues that certainly should be checked out.
ReplyDelete