My mom was operated for a brain tumour and diagnosed with GBM on July 24th. She is scheduled to start radiation and chemo on August 14th.
Ever since the diagnosis I've been researching continuously. There is too much information to process in such a short amount of time so I come to you for help...
I am trying to put together a startup cocktail that will work best with radiotherapy. So I'm looking to first add items:
- that have been proven to be most effective. I can add the ones that are less effective later.
- that are relatively easy to access in Romania or the EU.
Thank you and best wishes to you all.
Hi Paul,
ReplyDeleteYou may want to check out my Radiation page over at Astrocytoma Options.
http://astrocytomaoptions.com/radiation/
There is some clinical trial support for high dose valproic acid during radiation, and for chloroquine (trials conducted in Mexico) during radiation and chemotherapy.
Extreme diets such as the ketogenic diet are probably also most helpful during the radiation stage (evidence from rodent models).
Depakote was the form of valproic acid used in the trial I mentioned above. This was a common anti-seizure medication for brain tumor patients before Keppra was introduced.
DeleteThank you so much Stephen for the recommendations.
DeleteRegarding the keto diet... Dr. Thomas Seyfried claims that any cancer could be starved with a combination of keto diet + a glutamine antagonist drug. Do you know of any research proving this theory? Do you know what drug we should take to inhibit the glutamine absorbtion?
The theories around the ketogenic diet as a cancer treatment are based on the idea that cancer cells can't use ketones for fuel, whereas the normal cells of the body can. I wish it were that straightforward. Lab evidence shows certain experimental rat gliomas can oxidize ketones without difficulty. It's likely that a ketogenic diet is more useful for some tumors than for others. Seyfried is known for making grand statements like the one you mentioned and has lost some credibility in the reasearch community for that reason. See a contrarians view of Seyfried here:
Deletehttps://sciencebasedmedicine.org/ketogenic-diets-for-cancer-hype-versus-science/
I'm not taking sides here, and I believe there is value in lots of what Seyfried has to say, I just think he goes too far sometimes.
Glucose and glutamine are primary carbon sources for all cells, not just cancer cells. Special restricted diets can probably slow down a tumor, but in my view it's not possible to starve a tumor to death with dietary interventions without actually starving yourself to death. However combining metabolic therapies with other kinds of therapies is very useful, it's all part of the cocktail approach, attacking the problem from all angles.
I'm not sure what specific glutamine antagonist Seyfried might have in mind. Click on the "CRONaxal_oxaloacetate" label on the right of this blog to read posts on that. High doses of oxaloacetate are thought to deplete blood levels of glutamate and by extension glutamate around the tumor.
https://www.ncbi.nlm.nih.gov/pubmed/22392507
He has an in vivo experiment on mice, in which he claims some extraordiary results: https://youtu.be/APwnkpD_BfI?t=50m52s
DeleteServus Paul,
DeleteUnde ai operat-o pe mama?
Eu am pe soțul meu diagnosticat cu glioblastom, operat în 2014 , și este langa mine. Toti doctorii se mira, și este fara recidiva. Este 0oveste lunga, dar îți împărtășesc tot.
La Spitalul Judetean Timisoara a fost operata. Astazi am fost la clinica Oncohelp din Timisoara sa ne programam la radio, si peste vreo 3 saptamani incepem. Sunt curios sa ascult povestea voastra.
DeleteServus,
ReplyDeleteAm avut un an greu in 2014, noi suntem din Brasov,soțul meu la începutul anului a fost diagnosticat, la spitalul județean, de tumoare la creier. Nu am vrut operatie în Brașov, am optat pt București, bagdasar Arsenie, aici a avut prima operatie. Nu am nimic sa ii laud, din contra, s-a pricopsit și cu o infecție intraspitaliceascaa la lichidul cefalorahidian. Nu am primit o imagine după operație, și toți Dr. mă sfătuiau sa las mostra de tumoare că nu are scăpare, i-au dat max. 6 luni de trăit.,dar eu nu m-am lăsat, și sub nici o formă nu am vrut sa urmez teatament standard, daca ei au zis că moare,eu m-am incapatanat și am căutat pe net supraviețuitori,nu am găsit, am găsit înschimb un Dr. Care dădea 30 % șanse de supraviețuire, am urmat protocolul lui care constă în suc, făcut din sfeclă roșie, varza rosie, morcovi, țelină și castraveți, și mâncare fara proteina animala, adică vegan, 1/4 gătită și restul cruda+ semințe de tot soiul. Cu toate astea după 6 luni a recidivat tumoarea. De data asta, a 2a operație am făcut-o la spital privat, tot la București, Monza brain institute, se numește, Dr. Sergiu Stoica l-a operat, sa ii de-a D-zeu sănătate. A fost operație reușită, i-a scos toată tumoarea. După a doua operatie nu am reușit să facem radioterapie, și a recidivat rapid, într-o lună . Dar era alta locaaatie, șansă a fost că am mers la control după o lună în București, și în fața cabinetului la Dr. A făcut criza de epilepsie,l-au luat rapid, și Dr. Mi-a zis: îl operam acuma sau va va intoarcetî la o data data stabilita. Am optat pentru atunci. Și așa a fost operat a treia oară. Soțul meu nu își aduce aminte de a treia operatie. Dar a fost la fel de reușită. După a treia operatie , am venit la brasov , oncocard, și am făcut radioterapie, am descoperit și supraviețuitorul, și anume Ben Williams și Rich . Am luat legatura cu ei, și am făcut cocteilul amintit acum 4 ani.
Ii doresc sănătate mamei.
Wow. Ma bucur mult ati avut puterea si ambitia sa treceti prin toate astea. Va doresc multa sanatate in continuare.
DeletePoti sa ma indrumi ce cocktail ati folosit si de unde ati reusit sa procurati diferitele medicamente?
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ReplyDeleteStephen, I managed to find the valproic acid and we're starting to take it 1 week before radiochemo. She is on carbamazepine right now. Should we stop taking it seeing as it's alternative anticonvulsion drug to the valproic acid?
ReplyDeleteThere are several things to consider. Was she given carbamazepine due to a history of seizures and need for seizure control, or was it given only as a preventative?
DeleteI would probably switch over to valproic acid as an alternative to carbamazepine if possible, due to the numerous studies that show VPA can have anti-cancer effects in addition to anti-seizure effects. I believe the key to its anti cancer effects is that the dose needs to be high enough, as it was in the phase 2 trial in combination with radiation.
https://www.ncbi.nlm.nih.gov/pubmed/26194676
25 mg/kg per day of Depakote divided into two daily doses (12.5 mg/kg twice daily) was used in this trial, and typical anti-seizure doses are often lower than this.
I would also probably seek a doctor's guidance when making the transition. Often anti-seizure drugs require a tapering down period before stopping.
She has no history of seizures. But she had her brain operated on, so I believe it's for that. We just made the tranzition today. She took the VPA instead of the carbamazepine. We're gradually increasing her dose this week so that we reach 25mg/kg/day next week on the day she starts chemo.
DeleteShe is also on keto and there is this? Any thoughts?
https://www.ncbi.nlm.nih.gov/pubmed/28626875
It's probably not a bad idea to have blood levels of valproic acid monitored anyway, even if not on a ketogenic diet.
Delete