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This is a presentation about the Toca 511 / Toca FC trial. There are 6 long term survivors (4 GBM, 2 AA), all of whom had a complete response, And once they achieve a complete response, NONE had a recurrence. We never use the word "cured" when talking about a GBM, but having a clear scan for over 3 years makes us think it is possible a few of these patients may have been cured. It is only a small % at this time - 43% have some benefit from the treatment, and 20% have a significant response. Hopefully it will only get better and this may lead to a major breakthrough.
The Musella Foundation was an early supporter of this research (and they acknowledge us on the presentation:)
The Tocagen trial is open again, for patients with high grade glioma.
These are exciting trials.
It is nice to see more research on other uses for the Optune device.
Very scary - 1/4 of all children had a brain abnormality on MRI. Only 1/2 of 1% had something serious. I am not sure what this means for the concept of routine screening for brain tumors. The vast majority of abnormalities is nothing serious but might cause unnecessary surgery and worry.
These researchers looked back at a failed trial and found that for a specific subtype of gbm, it actually doubles or triples average survival. They are running a trial on that subtype now.
This clinical trial should be considered by anyone with an inoperable gbm. Early results looked very good.
This is an interesting video about the trial of MDNA55. This is a new approach to treatment and did well in earlier studies. (Medicenna is a sponsor of the Musella Foundation)
This is the greatest benefit of our online support groups. We have people who have been through everything, and have researched everything. It is a place where you can boucne ideas off of others instead of just finding random medical advice on the internet. It is impossible for someone who was recently diagnosed to understand the difference between real and fake news. They so much want to find a cure that they may be easily mislead by unscrupulous people. Actually, some of the people promoting these cures are good people who actually believe in it - because they do not have the background to understand how science works. An example: a relative was fighting a gbm and went through ups and downs. One down (after her 3rd course of radiation) was so bad we thought it was the end. She could only eat lemon ices. Had trouble chewing and swallowing anything else. And she had a miraculous recovery. In her mind, it was due to the lemon ices and she was telling people to eat lemon ices. In reality - the down was caused by damage and swelling from the radiation, which she recovered from. It is all in the point of view.
The best online support group for brain tumor patients is the braintumor treatments group at https://virtualtrials.com/braintumor-treatments.cfm
This is one of the most promising treatments in the pipeline.
This is another of my favorite trials, They now offer free travel to Florida for participants!
This is the type of research and thinking that can lead to major breakthroughs. Figuring out why treatments fail, and putting together intelligent combinations is the path to breakthroughs. This research is in mice, hope they try it on people soon.
They did not say how the patients did, but they did report that they were able to deliver the drug to the correct place in a higher percentage of the time than in previous trials. That was the big problem with previous trials involving convection enhanced delivery. In the first such trial, the PRECISE trial, it was found that most or all of the patients did not get the drug to the correct place - which didn't give the drug a chance to work - so the trial failed. More recently the Tocagen trials have used CED and have vastly improved the ability to get the drug where it needs to go. Hopefully this is another step toward getting the drug to the correct place 100% of the time.
(Disclaimer: Medicenna is a sponsor of the Musella Foundation)
We partnered with the Pediatric Brain Tumor Foundation to distribute these animated films for any kids who either have a tumor or know someone with a tumor. Makes it easy to explain to kids what is going on.
Interesting approach. Works in mouse model, hope it works in human trials!
This is the wave of the future in clinical trial design. They will be broadcasting the event on facebook.
What these people do not understand is that for the hard to treat cancers - like glioblastoma, the cure is most likely not going to be a single drug. It will be a combination of several treatments. However, we can not easily test the combinations until the drugs are approved. The huge failure is they are not tracking the results. I feel the only way to home in on the ultimate cocktail is to track all cancer patients - the treatments they do and the outcome. Without that data we are doomed to failure.
Congratulations to one of my favorite neuro-oncs!
Well deserved!
The FDA issued 3 new guidence documents relating to expanded access of experimental drugs. This makes it a lot easier for your doctor to get permission to use them. Big step, but not enough.
This is a good sign - no safety problems identified and the trial will be allowed to continue until it completes.
