Hallo Jan,
Ik vind het pijnlijk te horen dat ook jij door een hersentumor getroffen ben. Heel netjes dat je al zo snel tot aktie kom! Heb je al een second opinion aangevraagd. Bij mij zeiden ze in het UMC ook dat er niets aan te doen was en dat een second opinion niks zou opleveren. Via het aanschrijven van neuro-oncologen in Amerika ben ik toen toch een second opinion bij de Daniel de Hoed kliniek gaan halen en die dachten er toch heel anders over. Ik heb nu net een functional MRI-scan gehad en volgende week gaat men kijken of ik toch niet geopereerd kan worden hetgeen mijn dokter wil doen als hij volgens die scan minimaal 50% met niet al te groot risico kan wegsnijden. Een heel ander verhaal dus dan wat mijn eerste 2 neurologen zeiden en wat in Nederland gewoonlijk gezegd wordt. Het weghalen van de tumor zou mijn leven toch wat kunnen verlengen.
Verder is mijn ervaring dat je vooral zelf alles uit moet zoeken. Ik wens je heel veel sterkte!!!
Groeten, Nico
O ja, om je vraag te beantwoorden, ik neem aan dat je DCA bedoeld en hierbij stuur ik je een bericht daarover wat wij vandaag op internet vonden en ook naar Roel gestuurd hebben. Hoewel ik vind dat Roel erg goed bezig is ben ik zelf nog niet zo ver en nog maar net patient van een laaggradig glioom en wacht ik nog even de medische wetenschap af maar zeker na het lezen van dit bericht ga ik dat toch nog beter onderzoeken.
==========================
Promising brain cancer drug moves to human trials
Without pharmaceutical money, research funded by donations, grants Last Updated: Thursday, September 27, 2007 | 2:47 PM ET
CBC News
Researchers at the University of Alberta have been flooded with calls from people volunteering to take part in human trials for a cancer drug that significantly shrunk tumours in rats.
Health Canada has approved dichloroacetate, or DCA, for a limited trial on people with an aggressive brain cancer called glioblastoma. Researchers are looking for 50 patients in Edmonton who have already tried chemotherapy, surgery or radiation with no success.
The university has already received 100 phone calls from potential volunteers.
Known as “The Terminator,” the cancer has an average survival rate of one year with conventional therapy, said Dr. Kenn Petruk, head of neurosurgery at the university.
The drug, to be tested over the next 18 months, has already showed it can shrink lung, breast and brain tumours in animal and human tissue experiments. Lead investigator Dr. Evangelos Michelakis said doctors will know early into the trial whether DCA is having any effect.
“In six weeks or so, we will know if the drug will have some efficacy on the tumour,” Michelakis said at a news conference Wednesday. “But that doesn't mean that the job is done. We still have to show that the tumour didn't increase or, even better, decreased.”
Researchers said DCA cuts tumours off from the glucose they feed on. Without it, cancerous cells die off.
The team will monitor how much glucose the tumours are taking in during the treatments and then watch to see whether they stop growing or even shrink.
No debilitating side-effects expected
DCA does not appear to harm normal cells, which means there would be none of the debilitating side-effects such as nausea and extreme fatigue associated with conventional cancer therapies.
No pharmaceutical companies are involved in the trial, which Michelakis said is because DCA is cheap and can't be patented. Researchers around the world have raised $800,000 in grants and donations to fund the clinical trial.
But Michelakis emphasized that DCA is not a miracle cure.
“Oncology is full of examples of miracle drugs in animals that never make it because they don't work in human beings,” he said.
“That's why I want to emphasize of equal importance to this drug itself is the fact that such an effort is taking place and it should inspire other places to develop generic drugs without the support of the industry.”
Don't self-medicate, cancer society warns
DCA is already used to treat lactic acid buildup in children as well as patients with diabetes and AIDS.
In March, reports of cancer patients trying to self-medicate with DCA prompted the Canadian Cancer Society to warn people not to use it until it has been fully tested on humans.
Michelakis said it will be six months or more before any results of the clinical trial will be made public.
===================
Nico misschien heb je hier iets aan. Hebben ze in Dusseldorf uitgevoerd maar het AvL heeft ook een speciale PDT afdeling. Met ALA zijn al heel veel goede studies uitgevoerd met PDT zie http://www.kanker-actueel.nl/index.asp?blz=an_al.PDT
ik hoop dat het nog goed met je gaat, kees
1: J Neurooncol. 2007 Nov 23 Links
Long-sustaining response in a patient with non-resectable, distant recurrence of glioblastoma multiforme treated by interstitial photodynamic therapy using 5-ALA: case report.Stummer W, Beck T, Beyer W, Mehrkens JH, Obermeier A, Etminan N, Stepp H, Tonn JC, Baumgartner R, Herms J, Kreth FW.
Department of Neurosurgery, Heinrich-Heine-University, Moorenstr. 5, 40225, Duesseldorf, Germany.
Glioblastoma multiforme continues to be a devastating disease despite modest improvements in survival achieved at present, and there is an urgent need for innovative treatment concepts. Five-aminolevulinic acid (ALA) is a drug which induces protoporphyrin IX accumulation in malignant gliomas and has been explored for fluorescence-guided resections of these tumors. ALA is also under investigation as a photosensitizer. We report a case of a patient with prior left frontal glioblastoma multiforme treated by surgery, radiation and chemotherapy, who developed a remote lesion in the left insula, which was refractory to secondary treatments. In a compassionate use setting she was treated by oral application of ALA (20 mg/kg bodyweight), and stereotactic phototherapy achieved by positioning four laser diffusors using 3-dimensional irradiation planning, and a 633 nm diode laser. The lesion disappeared 24 h after therapy. Circumferential contrast enhancement was observed at 72 h, which disappeared in the course of subsequential months. Edema resolved completely. The patient is still free of recurrence 56 months after treatment, demonstrating an impressive and long-lasting response to this novel mode of therapy.
PMID: 18034212
Nico schreef:
>
> O ja, om je vraag te beantwoorden, ik neem aan dat je DCA
> bedoeld en hierbij stuur ik je een bericht daarover wat wij
> vandaag op internet vonden en ook naar Roel gestuurd hebben.
> Hoewel ik vind dat Roel erg goed bezig is ben ik zelf nog
> niet zo ver en nog maar net patient van een laaggradig glioom
> en wacht ik nog even de medische wetenschap af maar zeker na
> het lezen van dit bericht ga ik dat toch nog beter onderzoeken.
>
> ==========================
> Promising brain cancer drug moves to human trials
> Without pharmaceutical money, research funded by donations,
> grants Last Updated: Thursday, September 27, 2007 | 2:47 PM ET
> CBC News
> Researchers at the University of Alberta have been flooded
> with calls from people volunteering to take part in human
> trials for a cancer drug that significantly shrunk tumours in
> rats.
>
> Health Canada has approved dichloroacetate, or DCA, for a
> limited trial on people with an aggressive brain cancer
> called glioblastoma. Researchers are looking for 50 patients
> in Edmonton who have already tried chemotherapy, surgery or
> radiation with no success.
>
> The university has already received 100 phone calls from
> potential volunteers.
>
> Known as “The Terminator,” the cancer has an average survival
> rate of one year with conventional therapy, said Dr. Kenn
> Petruk, head of neurosurgery at the university.
>
> The drug, to be tested over the next 18 months, has already
> showed it can shrink lung, breast and brain tumours in animal
> and human tissue experiments. Lead investigator Dr. Evangelos
> Michelakis said doctors will know early into the trial
> whether DCA is having any effect.
>
> "In six weeks or so, we will know if the drug will have some
> efficacy on the tumour," Michelakis said at a news conference
> Wednesday. "But that doesn't mean that the job is done. We
> still have to show that the tumour didn't increase or, even
> better, decreased."
>
> Researchers said DCA cuts tumours off from the glucose they
> feed on. Without it, cancerous cells die off.
>
> The team will monitor how much glucose the tumours are taking
> in during the treatments and then watch to see whether they
> stop growing or even shrink.
>
> No debilitating side-effects expected
> DCA does not appear to harm normal cells, which means there
> would be none of the debilitating side-effects such as nausea
> and extreme fatigue associated with conventional cancer
> therapies.
>
> No pharmaceutical companies are involved in the trial, which
> Michelakis said is because DCA is cheap and can't be
> patented. Researchers around the world have raised $800,000
> in grants and donations to fund the clinical trial.
>
> But Michelakis emphasized that DCA is not a miracle cure.
>
> "Oncology is full of examples of miracle drugs in animals
> that never make it because they don't work in human beings,"
> he said.
>
> "That's why I want to emphasize of equal importance to this
> drug itself is the fact that such an effort is taking place
> and it should inspire other places to develop generic drugs
> without the support of the industry."
>
> Don't self-medicate, cancer society warns
> DCA is already used to treat lactic acid buildup in children
> as well as patients with diabetes and AIDS.
>
> In March, reports of cancer patients trying to self-medicate
> with DCA prompted the Canadian Cancer Society to warn people
> not to use it until it has been fully tested on humans.
>
> Michelakis said it will be six months or more before any
> results of the clinical trial will be made public.
> ===================
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