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Call for help: Glioblastoma Multiforte

glioblastoma

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#1 Jochen

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Posted 05 May 2014 - 01:27 PM


Dear all,

 

I am writing this on behalf of friendly couple struck by hardship.

 

Bernard has Gliobastoma Multiforte and the doctors have given him about 12-24 months to live.

 

He has already take chemo with Termodar (and some additional chemo therapies).

His additional challenge is that he is allergic for contrast.

 

Background

http://brainstormber....wordpress.com/ (in dutch however)

 

Call for help

  • any information, studies, experts you can point us toward that could help prolong Bernard's life would be amazingly appreciated

We hope that we can prolong Bernard's life and hope that in the near future better treatments are found for this agressive cancer.

 

the main previous thread is from the late Kim. And I hope that in those 12+ months something more has come up.

http://www.longecity...r-tips-for-kim/

 

Thanks in advance for any assistance!

 

Don't hesitate to reach out to me if you have any questions!



#2 Jochen

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Posted 05 May 2014 - 01:29 PM

new breakthrough to prolong the life by using Valganciclovir (only works if the trigger was due to the cytomegalovirus).

 

https://www.dropbox...._Multiforma.pdf

 



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#3 YOLF

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Posted 05 May 2014 - 01:44 PM

FYI, there are some new options for cryonics and given your location, your friend can even get cryonics at KrioRus.ru. I would put cryonics first. There aren't many who survive this if it's what Kim had. Definitely get your fundraising in order.

 

I recently started an emergency fundraiser (ongoing) that failed to raise money in time. I'd certainly use it to help your friend if you're interested. It has a small following and is in progress. In the mean time you can apply for assistance from the Venturists. www.venturism.info

 

If your friend hasn't already decided on cryonics, I strongly suggest getting them interested now.

 

Sorry, don't have any advice for the glioblastoma.


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#4 Jochen

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Posted 05 May 2014 - 05:16 PM

FYI, there are some new options for cryonics and given your location, your friend can even get cryonics at KrioRus.ru. I would put cryonics first. There aren't many who survive this if it's what Kim had. Definitely get your fundraising in order.

 

I recently started an emergency fundraiser (ongoing) that failed to raise money in time. I'd certainly use it to help your friend if you're interested. It has a small following and is in progress. In the mean time you can apply for assistance from the Venturists. www.venturism.info

 

If your friend hasn't already decided on cryonics, I strongly suggest getting them interested now.

 

Sorry, don't have any advice for the glioblastoma.

 

Cryonics, thanks for this information.

 

I understand that atm, glioblastoma is still pretty much a certain death sentence.



#5 xEva

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Posted 05 May 2014 - 09:46 PM

If his weight allows (BMI > 19), let him try fasting. There is quite a lot on it: https://www.google.c...lastoma fasting
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#6 Phoenicis

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Posted 05 May 2014 - 11:42 PM

Hi I'm really sorry to hear about this, is there anything you can tell us about Bernard's background? Which medications was/is he on and was he life extension enthusiast taking any supplements?

I am hoping that something helpful comes of this thread!


Edited by Phoenicis, 05 May 2014 - 11:44 PM.

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#7 sthira

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Posted 06 May 2014 - 01:08 AM

Has he considered enrolling in a clinical trial?

http://www.clinicalt...obastoma&rank=2
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#8 Werper

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Posted 06 May 2014 - 02:11 AM

http://seekingalpha....hage-gminus-200

 

I don't know if they are still looking for participants in the alliance trial, but worth looking into.


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#9 Jochen

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Posted 06 May 2014 - 04:23 AM

thanks you guys! Checked it out and will make sure they take this into consideration as well.

 

Now I am gathering the supplements that have the highest effectiveness for GBM.

The credo: less is more should probably be kept into consideration as else I recommend them 100's supplements :-).

 

Was already thinking along the lines of :

 

  • PQQ-CQ10-Shilajit combination
  • Fishoil
  • Vitamin B complex (or general multivitamin)
  • grape seed extract
  • high dose of Liposomal Vitamin C

 

Thanks again for the input folks!



#10 joelcairo

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Posted 06 May 2014 - 04:59 PM

David Servan-Schreiber - Anticancer: A New Way of Life

 

This is a great book, and although the author is a little vague I believe he was diagnosed with glioblastoma.

 

There are some great suggestions in the other thread you cited, I don't know why you settled on this particular list. B vitamins in particular may be either harmful or beneficial depending on the exact, unknowable context. There are SO many other good options I don't see the point of supplementing them. What about the suggestions of Scutellaria baicalensis, apigenin, liposomal curcumin, and Celebrex?

 

I would not take a general multivitamin, for risk of copper, iron, chromium, B vitamins and possible inappropriate forms of vitamins A and E. Combine that with too-low doses of many things you really want, and what's the point of taking one at all?

 


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#11 to age or not to age

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Posted 06 May 2014 - 05:33 PM

I think your friend should look into Dr Michelakas (Alberta) and a chemical called DCA (Dichloroacetate)

The idea here has to do with cancer metabolism and the Warburg effect.  I am editing a video piece on 

SIRT3; cancer and the Warburg effect are being studied with regard to this sirtuin. Haigis at Harvard is expert.

Michelakas has success in a human trial of 5 advanced glioblastoma patients.


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#12 addx

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Posted 06 May 2014 - 07:17 PM

Well, to the best of my knowledge neurone development/growth (proliferation and differentiation) is modulated by opioids (mu and kappa respectively) so I immediately went to check what effect they have on glial cells, and it seems they proliferate them as well, in fact kappa opioids that normally differentiate and sometimes kill neurones seem to proliferate glial cells. This seems somewhat logical though since kappa signals for immediate survival and use(rather than mu for growth and investment) and glial cells are meant to help survival.

So I went to see if anyones used naltrexone(opioid antagonist) for glioblastoma and yes, studies are going on right now.

http://clinicaltrial...how/NCT01303835

http://www.ldnscienc...cancer-patients


Now, the LDN benefits are being probably overhyped generally for all kinds of ailments, but in this case there might be reason for it to work.

Anyway, point is, to also research opioids as they are given as analgesics but are infact the primary modulator of neuronal stem cell growth and differentiation, so they might have side effects towards glial cells as well.

Naturally, the number one alternative option seems to still be cannabis oil. It is mentioned in that thread as well and I'm sure there's heaps of materials on it.

Another thing popped into my mind: ketogenic diet. Tumors feed on glucose and some are especially vulnerable to ketogenic diets. Ketogenic diet as a treatment is also bound to the brain - it is the only cure (meaning it can be ceased and the benefits remain) of epilepsy and efficacy is I think at 50% in children so there might be something more there. Ketogenic diet forces mitochondria energy production which I believe is misfunctioning in tumors (mitochondria I believe are responsible for inducing cell suicide before out of control replication begins?).

http://www.ncbi.nlm....pubmed/24442482

http://www.google.hr....66111022,d.ZWU

Hope that helps :/

Edited by addx, 06 May 2014 - 07:23 PM.

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