One patient with glioblastoma still alive nine years later
by Katie7 on Mon Jan 07, 2013 02:27 AM
My husband is 29 and was diagnosed with GBM IV on Nov 20, 2012. The tumour was able to be removed (no adverse effects) and he has just started treatment. As his tumour was non-methylated he was eligible for an Australian clinical trial that involves 6 weeks radiotherapy with concurrent chemo (oral temozolomide and procarbazine) for 6 months along with clinengitide (infusion twice weekly for 18 mths). No side effects yet, just a bit of fatigue but we are only just a week in.
He started on a ketogenic diet about 1 month ago as we have found positive journal articles re the effects of ketosis and brain tumors.
Keen to hear anyone else's experience with non-methylated GBM, a ketogenic diet or both.
by Malaika01 on Tue Feb 12, 2013 12:34 PM
I am sorry about your husband's GBM and I hope his treatment will work out. My husband who is 45years old was diagnosed in March 2012 and has had two craniotomies and three recurrences after failed TMZ is now responding well to Avastin. He is also on ketogenic diet which I believe is making the difference because previously his bloods were always poor. We have also consulted Jean Wallace on supplements. Good luck with the treatment.
by Bee_Rich on Tue Feb 12, 2013 07:24 PM
my NO says that ketogenic diets don't have significant fx on brain tumors and there has been various versions and renewed 'buzz'every couple of years for the last couple of decades.
But after reading the Dec'12 KetoCal® sponsored paper in PlosONE, My interest is piqued. I realize it was a rodent study, but 100% of the keto population survived to normal lifespan. 10% 0f chow fed subjects lived out to normal lifespans.Someth ing seems to be happening.Enough for me to switch to a carb restricted diet.
I figure it cant hurt too badly and might just help, Already notice it helps with appetite control, weight loss and blood sugar control.
article is at: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjourna
I havent scrutinized the charts or methods/materials yet
by Bee_Rich on Wed Feb 13, 2013 03:06 PM
I just found some more info re: keto diets and cancer. Dr. Geeorgia Ede has some great posts and discussions regardin molecular basis for low carb diets, she also posts about her experience undertaking a keto diet. the url is:
also caveman doctor is on topic. the connent sections are very helpful too:
alsoI am contacting my biochem prof from my grad school days. her lab does research with keto diets and children. maybe she can help
by jon4156 on Sun Feb 17, 2013 10:18 PM
Laboratory rat success does not always scale to humans. There are some detailed studies on ketonic diets with rats infected with cancer, however in the most detailed one I've seen all rats still died of the cancer. Life was lengthened but the cancer not cured or stopped.
Most humans would consider the scale of ketonic diet that might slow their cancer not to be a quality life. Find photos of the skeletal concentration camp survivors from WWII and you'll get an idea of how ketonic you have to be to affect the growth rate of cancer in humans.
by Bee_Rich on Mon Feb 18, 2013 07:34 PM
Jon, I prefaced my post with the statement "I realize that it was a rodent study", with all the implications that are associated with studies conducted phylogenetically Cross-Order. Most such research is tossed.we must be careful, however, to remember that most successful human treatments start with rodent studies. I was most impressed with my referenced article from December 2012, where 100% of the treatment population (n=30) survived a full normal lifespan. as mentioned, I need to read the paper to better critique.
Ketogenic diets are currently being used for seizure control, bodybuilding, weight control, amongst other uses. I'd bet most participants would emphatically say their quality of life is good. Just Google for info.
And strict Kedah genic diets may not even be necessary for tumor control. Look at Kosoffs work at Johns Hopkins, with pediatric and adult seizure patients. he tested a less stringent diet, dubbed, the modified Atkins diet that produced significant results.clearl y, neurological effects occur with such diets.
Might a modified Atkins diet result in tumor reduction, without significant quality-of-life? I'm not ready to toss, yet, and I bet literature reviews and attending conferences will show researchers aren't either.
by GeeBeeEm on Thu Feb 21, 2013 09:51 PM
by int001 on Sun Sep 14, 2014 05:07 AM
On Feb 21, 2013 9:51 PM GeeBeeEm wrote: There is enough evidence to convince me that it's worth trying. I've been on the diet for about 3 weeks now. I'm not religious about it (I haven't changed medicines to starch-free excipients ones for example)
The first week was miserable, but since then I feel great on it. My liver enzymes have gone up though.
On Feb 21, 2013 9:51 PM GeeBeeEm wrote:
by james-peters on Sun Sep 14, 2014 05:47 AM
It needs to be calorie restricted. High in good fats 70-80% of calories (coconut, nuts, seeds, avocados). Around 10-15% in protein (low in glutamine if you can) and the rest from carbs. Also it works better hyperbaric oxygen therapy and low dose 2 deoxy d glucose. Here is some more info http://vimeo.com/54866497 http://www.singlecausesinglecure.org/glioblastoma-multiforme http://www.singlecausesinglecure.org/raffis-story/
Dr. Seyfried uses ketones and glucose as the measures of this new metabolic state. The parameters associated with an ideal state are ketone levels equal to or higher than the glucose level in your blood. "There's a high ratio of glucose to ketones. But in a fasted or therapeutic state, this ratio is actually reversed. Ketones can actually become higher than glucose," he says. "What they can do is they can get their blood sugars down to 2.5 to 3 millimolar [equivalent to about 55-65 mg/dl], and then their ketones to up to 3 or 4 millimolar, where the ratio is now reversed. It's this state that now brings the body into this new physiology." http://articles.mercola.com/sites/articles/archive/2013/06/1 http://www.ralf-kollinger.de/wp/wp-content/uploads/2014/02/K
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