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KlausBreuer
Member since Jul-15-10
18 posts
Jul-15-10, 07:57 AM (PST)
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"About to use DCA for a brain cancer"
 
   Hi everybody!

After reading about it quite a lot on the net, talking to my house doctor and the neurology prof at the university clinic, it looks like Sodium DCA sounds like a good idea to me.

Allow me to introduce myself: male, 42 years of age, currently living in Munich, Germany.
End of 2003 I had a completely unexpected epileptic attack - while driving my little roadster. It ended up in oncoming traffic, and five vehicles got completely demolished. One chap broke his arm, but that was it... I didn't even get a scratch.
Woke up in the ambulance, had a CT at the Clinic Grosshadern and there it was found out that I have a largish left temporal diffuse Astrocytoma grade II (http://en.wikipedia.org/wiki/Astrocytoma). Interesting.
Beginning of 2004 I was irradiated (X-rays only), which shrunk that thing by about 25%. I got checked via MRT and FET-PET every few months, and some years ago I had to start doing Chemo (Temozolomid) every now and then.
I can handle this well, merely get a bit tired, not feeling too well, and having a massive drop in my concentration abilities. This drop makes me unable to work while doing Chemo (I'm a computer programmer - concentration is everything).

I had some difficulty getting Sodium DCA (the pharmacies refuse to have anything to do with it), but then ordered successfully from http://pharma-dca.com/.
I will see a pharmacy tomorrow about having that stuff tested.

I've called some more pharmacies - most of them cannot produce pills (or rather, capsules) for me as they lack the equipment, and many others are scared of legal involvement.

I'll keep trying of course, but now I'd like to know how you handle it. Do you use a simple scale? A cheap (eBay! 20 EUR) scale claiming enough accurate (+- 0.01 gram)? An expensive one (800 EUR) guaranteed to be accurate for two years?
Do you pour it into water? Perhaps pour he correct amount into 2 litres of water, keep that in the fridge, and measure how much to drink? Or do you simply measure the correct amount of that dust into a glass of water every day? Spread it on a piece of bread?

My plan of starting DCA is being very careful. It *is* a brain tumor, and thus I've aborted my beloved coffee, tea, RedBull and all that, switching to Rooibos Tea and water.
I'd start by taking 5 mg (always per kg) every other day for a week. Then 5 mg per day. Then switch between 5 and 10 mg every day. Week after that, it's 10 mg every day, and I'll probably stick to that.

The prof approves, especially as it seems that I can take my Chemo and the Sodium DCS simultaneously (otherwise, it would have been No Go - the chemo does work on me, and I won't interrupt it).

I'd very much appreciate all feedback - how you do it, what you think, tips, ideas, thoughts... anything

Greetings from Octoberfest-crazy Munich,
Klaus

PS: I hear about your doctors (in the USA?) refusing to even talk about DCA. Over here they were all very interested.

--
"What, I need a *reason* for
everything?" -- Calvin
"Should I or shouldn't I? Too
late, I did!" -- Hobbes


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KylieOz
Member since Nov-23-09
27 posts
Jul-15-10, 01:49 PM (PST)
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1. "RE: About to use DCA for a brain cancer"
In response to message #0
 
   Hi Klaus, I'm sure others who actually use DCA will give you feedback to most of your questions. I thought I would address your question regarding the scales.....I bought my mother scales off e-bay and they work just fine!! I think we paid a little less than twenty euros....these were called "pocket jewellry scales" (or something like that)....I hope this info is helpful. Best of luck with everything and I'll look forward to hearing how ou are getting along.

Best wishes
Kylie


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KlausBreuer
Member since Jul-15-10
18 posts
Jul-19-10, 00:51 AM (PST)
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2. "RE: About to use DCA for a brain cancer"
In response to message #1
 
   Hi!

Yes, Friday I bought a 'Tomopol' scale off eBay: up to 200g, accuracy +/- 0.01g, together with two 100g weights to be able to calibrate it every now and then.
Cost was around 20 Euros.

I talked to several pharmacies about high-quality scales, and they told me of a company named 'Satorius', here in Germany. I talked to them, they have all kinds of scales, but the one with the same simple layout as above costs around 250 Euros...

What happened since my post:

* I got positive feedback on the http://pharma-dca.com/ site. Can anybody confirm this?

* Several more pharmacies refused to have anything to do with this at all, including creating pre-sized tablets. They were all interested, but, again, feared legal involvement...

* Seeing that I weigh too much (about 95kg for 188cm, I look and feel a lot better at around 80kg), I want to loose weight. Normally, I'd do hard training, combined with dieting.
No hard training allowed by the doc. Can't simply stop eating for a month or two either, as I have to take the chemo, which upsets my stomach unless I eat three hours after taking it.
Guess I'll stick to watermelon, carrots, and some protein (chicken legs) every now and then...

* I'd still be fascinated to hear about the way any of you actually take the DCA. Simply pour it into a glass of water?

* Anything to take in addition to Sodium DCA in order to handly possible neuronal damage in hands and feet? I hear about Magnesium, Vitamin B6 and B12, R+ Lipoic acid (whatever that is) and Benfotiamine (dito)... any feedback much appreciated!
(As said, no coffee for me, sadly)

Ciao,
Klaus

--
"What, I need a *reason* for
everything?" -- Calvin
"Should I or shouldn't I? Too
late, I did!" -- Hobbes


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joeyooser
Member since Feb-5-10
15 posts
Jul-21-10, 06:07 AM (PST)
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3. "RE: About to use DCA for a brain cancer"
In response to message #2
 
   I don't think the benfotiamine and R+ Lipoic actually do a lot to prevent the neuropathy, however I do take both and also calcium and magnesium just to be sure.

It sounds like your overall approach is sensible. Make sure you continue to take it and build up a reasonably large dose if you want it to be effective.

Yes you should dissolve it in a glass of water and drink it if you don't have pills. I do have the pills from Medicor and they are very convenient, and very expensive.


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KlausBreuer
Member since Jul-15-10
18 posts
Aug-05-10, 10:29 AM (PST)
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4. "RE: About to use DCA for a brain cancer"
In response to message #3
 
   What would you define as a reasonably large dose?

I've heard that 5 mg/kg already show results, am currently at 10 mg/kg. Might raise it to 15... would that be too low?

Ciao,
Klaus

--
"What, I need a *reason* for
everything?" -- Calvin
"Should I or shouldn't I? Too
late, I did!" -- Hobbes


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NH
Member since Aug-17-10
4 posts
Aug-19-10, 04:48 AM (PST)
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5. "RE: About to use DCA for a brain cancer"
In response to message #4
 
   We use 50 mg/kg - about 5g actually in 150 ml in cold water (room temperature) and drink about 1/4 in the morning, 1/4 over the day and 1/2 the rest before going to sleep. Without caffeine and on low dose of antiepileptics there are no side effects.
The dosage came from Michelakis: 25 mg/kg/d for 3 months, then escalation to 50 mg/kg/d. If the Km for PDHK2, where DCA works, is 0.2 MM, that means, you have a half maximum effect at plasma/brain levels of 0.2 MM (adults are expected to reach that with 25 mg/kg). That's why I feel, the dosage should be 50 mg/kg/d.
Huge news in Astrocytoma was recently discovered by IDH-mutational analysis. Thus, IDH1 mutation occurs early in tumorgenesis (in 70% of astrocytoma) and leads to a dryout of the TCA cycle (energy away from mitochondria to glycolysis). In easy words, it's more a metabolic disease and the shifts are easy to explain. According to these changes, DCA would change back a lot (not everything) of these shifts and slow down the growth, stabilize and decrease the tumor. So, I wonder why people use probably ineffective doses, alhough there is a targeted drug here as specific as gleevec, but of course in early clinical development.


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dustin
Member since Sep-13-10
21 posts
Dec-03-10, 00:13 AM (PST)
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6. "RE: About to use DCA for a brain cancer"
In response to message #5
 
   My wife has brain CA as-well and I had her ask her doctors about B-12 (she's part of the U of A study here in Edmonton) and they told her absolutely NOT to take it. She said she was told that taking B12 can be great with some forms of cancer but not with the brain?! I trust them as she has been kicking the snot out of that little tumour (55% reduction to date)

Others here may disagree but thats what we were told.....COQ10 is apparently a good idea though....she's now taking 200-300 mg a day.


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parachuteadmin
Member since Mar-20-07
70 posts
Dec-04-10, 03:27 PM (PST)
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7. "RE: About to use DCA for a brain cancer"
In response to message #0
 
   Hi Klaus,

You are wise to begin with low doses of DCA. One of the early glioma patients in the U of Alberta trial died during DCA treatment, possibly from tumor lysis syndrome. He had an extremely large tumor and received a very aggressive dose in an attempt to salvage a pretty hopeless situation. You, fortunately, are in a better situation.

These notes may be of interest:

http://dca-information.pbworks.com

Best of luck to you, my friend.

Parachute


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