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Thursday, 6 October 2016

Looking for help with our cocktail

Hi everyone,
I'm new to this blog and would love to get some advice. My dad was diagnosed in December 2015 with a glioblastoma. Unfortunately it's inoperable because of it's location (corpus callosum). I've just read Ben William's book and I think it's very sensible to try the cocktail approach. He finished radiation plus Temodal and is now in his 5th cycle of Temodal. After the 6th cycle he'll be switched to metronomic Temodal. He also takes:
- dexamethadone 4mg/day
- D-L-methadone 1,75ml/2x day
- Heparine injections because of a thrombosis
- Keppra 500mg/2x day
He is also using Optune TTF. But there's more that we want to do. I'm very interested in DCA but worried if it might interact with the methadone. From what I've read online, he should start on a low dose and without caffeine as brain tumor patients can't seem to tolerate a higher dose. Do you think that we should give it a try? I think it's pretty hard to get...
Additionally we're considering the following:
- PSK
- Melatonin plus Aloe Vera (again I'm worried because of the methadone as it makes him really tired)
- Fish oil (Omega 3)
-CoQ10
It would be so helpful for us if you could give u your advice!
Thank you so much
Steffi
at

5 comments:

  1. Stephen W7 October 2016 at 13:39

    Hi Steffi,
    Was his tumor biopsied? Do you have any other information on molecular pathology?

    I'm not aware of interactions between DCA and methadone, but not much is known about DCA interactions, as it isn't an approved pharmaceutical. It isn't difficult to get. It can be ordered online from the UK and other places.

    https://pharma-dca.com/

    I've shared the Brain Tumor Library with you (on Google Drive). See especially the "pharma and non-pharma" spreadsheet in folder 0. This gives a good overview on all the cocktail possibilities we discuss here, with a very approximate ranking system.

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  2. Steffi7 October 2016 at 14:13

    Hi Stephen,

    thanks so much for your answer. He did have a biopsy which confirmed his tumor as glioblastoma. The tissue was only tested for MGMT methylation and his tumor hypermethylated. I think that's why Temodal has been effective so far.
    His MRIs have been stable but the last one (a month ago) showed a bit of growth. The doctors said around 2-3mm.
    We really hope that methadone makes Temodal more effective but maybe we need to do more now.

    Thank you for adding me to the Brain Tumor Library. I'll have a look at it regarding the different cocktail possibilities.

    Have you ever heard of any problems with melatonin and methadone? Both will make him feel really tired and I'm worried that it could be too much or even dangerous.

    Thanks again for your help, Stephen!

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    Replies
    1. Stephen W7 October 2016 at 17:47

      I've not heard of any problem combining methadone and melatonin.

      Melatonin is taken before bed and actually has a rather short half-life in the body, so should not cause him to be tired during the day, as most of it will be cleared from his system by the next day.

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    2. Stephen W7 October 2016 at 17:52

      For what it's worth, the Cerner Multum database at drugs.com doesn't list any interaction between melatonin and methadone, though as it says in the fine print, "no results found - however, this does not necessarily mean no interactions exist"

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    3. Steffi8 October 2016 at 11:12

      Thanks a lot for the info! It's good to know that there shouldn't be any interactions between methadone and melatonin.

      Hopefully we'll be successful with our cocktail. I'm very interested in other peoples' stories with an inoperable glioblastoma.

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