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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!
This excellent article explains why Glioblastomas are so hard to treat - it reviews past history of treatments and suggest a new concept to fight glioblastomas. We (the Musella Foundation) gave the author a grant to study the treatment she talks about! It may eventually result in a breakthrough - although it is at the pre-clinical stage now.
Another great speaker tonight! Dr Kesari is an old friend - he is involved in a lot of cutting edge research including the CAR-T cell trial.
We do not have any more webinars scheduled. If you have any ideas for topics and / or speakers, let me know!
This is one of the most important (if not - THE most important) bill for brain tumor patients ever! It will drastically speed up the search for the cure, increase your treatment options, increase the amount of research being done, and hopefully decrease the cost of treatments!
We will soon ask for your help in supporting this bill. Do not do anything yet - we are trying to figure out how best to help. If anyone has experience in this area, contact me!
Al Musella, DPM
Musella Foundation
888-295-4740
Musella@virtualtrials.com
Great news! This brings the vaccine closer to approval. Early reports showed over a 6 month improvement in survival, which is significant and 23% of patients had tumor reductions. Fast track designation and orphan designation mean the FDA has looked at the data and shows an interest in speeding it up.
This drug is approved for other cancers so it may be available off label, so if the trial reports success, we can use it right away!
