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We need everyone to do this. Ask your entire family to do it as well as your friends and post it to social media!
This is exciting. Novocure is testing a high intensity version of Optune on recurrent gbm There are also about 26 clinical trials going on for Optune looking at it's use in other diseases and for glioblastomas combined with radiation, checkpoint inhibitors and other drugs!
This is a fascinating gene therapy that can be controlled by an oral drug - the gene therapy is injected into the tumor and it inserts a gene that when activated by the oral drug produces IL-12, which is an immune enhancer. The problem is too much IL-12 causes severe problems so there is a need to be able to control it. They use this oral drug to control it and can turn off the gene therapy if needed simply by stopping the oral drug.
They announced the first use of it in a DIPG patient. They used it on over 175 other patients with other cancers, mostly glioblastoma, with relatively good results. I wish them luck!
This grant will be combined with grants from many other charities, and it will allow the onc201 program to reopen soon for a few months. After that we will try to fund it on a month to month basis as long as needed (until FDA approval).
This is pretty shocking. They looked only at Medicare patients, aged 66 or older with glioblastoma.. and this study covered the years 2007 - 2013 so it doesn't reflect the benefit (and costs) of recent treatments like Optune (as Medicare only approved payments for Optune last year) and GammaTile.
They found that the average survival for GBM was ony 5.9 months for those who had surgery and only 3 months for those that did not have surgery. The numbers we usually see include young people who do much better.
This underscores the need for us to change the entire system. We have the opportunity to make a major change now but I need your help contacting your legislators (not even asking for donations!) . See virtualtrials.com/activism.cfm This will make a huge difference and give us 5-10 new treatment options within months after the bill passes. I could see it easily doubling average survival - just by you taking 5 minutes of your time.
Look at your pathology report to see if you have the PDGFRα mutation... if so it might be worth considering this combination! It is early work but they did the research the right way - they came up with a theory, tested it in the lab and in animals, then tried it on a small group of people and it did pretty well. The Musella Foundation helped support this project through our collaboration with the DIPG Collaborative.
Impressive gains for a relatively easy treatment. Valganciclovir (Valcyte) is approved for the treatment of cytomegalovirus so it is easily obtainable off label. Small study and needs to be confirmed but might be worth considering!
This experimental treatment is available in clinical trials at Duke (North Carolina), UCSF (California) and the University Hospitals (Ohio).
Interesting concept: use advanced imaging to find progression faster than the current methods - perhaps early treatment would improve results?
Wanted to say a big thank you to Wizathon.com, as well as our many volunteers and participants in the National Walk To End Brain Tumors. Wizathon helped us turn our live 5k events into virtual events. They did not do as well as in years past, but did much better than I expected considering the circumstances!
Hopefully things will get back to normal next year!
I feel that this is the most important bill we have ever came across for brain tumor patients.
We need tens of thousands of people to do this to have a chance of a quick passage of this bill. Please pass it along on social media - facebook, twitter and even TikTok!
Contact me if you have questions about this bill! musella@virtualtrials.com
From our good friends at the Dragon Masters Foundation - they will use the funds for brain tumor research! You can buy a dragon and watch the race live on Facebook. Should be fun!
Unfortunately, this trial was not a success. I was hoping it would work - this drug did well with ovarian cancer. It is not over yet - it may be worth testing with other combinations.
Congratulations to Dr Zagzag - he deserves it! We gave him a research grant a long time ago and he became one of my friends! He is one fo the best neuro-pathologists in the world,
This is great news for Europe. This vaccine was shown to be very safe, and early results show that it helps some patients, with more than 10 % of recurrent GBM patients survived over 3 years which is pretty good. They are applying for a conditional approval in Europe. Here in the USA we do not have conditional approvals yet and it will take another few years to make this available in the USA. I am working on a bill that would allow the conditional pathway to be used here in the USA. I will write a news blast about it in a few days!
This is sort of mixed results contrary to how the headline reads. In newly diagnosed MGMT unmethylated glioblastoma (this is the worst category of glioblastoma) , they reported about a 2 month improvement in progression free survival compared to historical data on temozolomide, which is good but for recurrent MGMT unmetylated glioblastoma, the did about the same as historical controls.
Bottom line - more research needs to be done to find ways to make it work better. It obviously has some effect but they need to work on how best to use it, why it doesn't work as well as we hoped and how to fix that. I think it will have a place in the ultimate cocktail, replacing temozolomide for MGMT unmethylated patients. Remember - temozolomide was rejected by the FDA the first time the FDA was asked to approve it because early testing did not show an improvement, but then later studies showed the major benefit that makes temozolomide the standard of care.
While we are closed, try goodrx.com to get discount coupons - it may help.
This is too early to tell if it would help brain tumor patients but it is a new approach - a new class of drug that might help ALL types of cancer! Will keep an eye on it!
