This is one of the most moving speeches about how devastating pediatric brain tumors are and the need to speed up development of treatments.
This is the wave of the future. It combines everything needed to speed up the search for the cure: finding the best treatments for each individual patient, helping them to get access, and analyzing the results so we learn from each patient. Instead of trying to find the right patients for a specific treatment, this turns it around and finds the best treatment for a specific patient.
The Musella Foundation is partnering with xCures and Cancer Commons to run compassionate use programs in a new way where we collect the real world data to help speed up drug approvals and learn best how to use drugs.
Disclaimer: I own stock in xCures, and am a consultant for them.
Our largest grant was a payment of $250,000 towards a $1 Million pledge we made to open the compassionate use program for the experimental drug ONC-201 in the USA, and to track the patients so we learn from every patient's experiences. We are now saving for the next payment, due at the end of this year, as well as another $2 million to open the program in the rest of the world!
This is the opening of the GBM AGILE trial, which will allow drugs to be tested much faster and easier for GBM. New drugs can be added and underperforming drugs dropped to home in on the best treatment or combination of treatments quickly!
I wish them luck!
Impressive early results!
GammaTile is an fda approved treatment which is an implant that slowly releases radiation to the tumor bed. See more details from our recent webinar on it at: https://virtualtrials.com/video2019.cfm?video=201905
This is from our friends at Store My Tumor.Com They provide services to store and freeze your tumor sample from surgery, as well as help you get access to the services that can use this tissue such as specialized testing and even the creation of custom made vaccines!
Great job by the people at the National Brain Tumor Society to get the Glioblastoma Awareness Day passed!
The virtual trial they are talking about is the next generation of our virtual trial registry. It takes the giant leap into offering ideas for treatment options. Our program never suggested anything - just observed what patients did and the outcome. This new program will evaluate each patient and come up with ideas for treatment options that fit their specific profile.
Disclaimer: I own stock in this company and am a consultant for it.
These meeting are to learn about Optune and meet people who are using it! One of them can be done online, the rest are real wolrd. Very much worth attending if you have a GBM or know someone who has one!
This is very impressive. 93% of GBM patients alive at 1 year compared to 65% historical controls. This treatment is a simple vaccine injection that does not require brain tumor tissue. It is just a shot in the arm or leg similiar to a flu vaccine, and has minimal to no side effects. A clinical trial recently opened at the Cleveland Clinic, which will combine a checkpoint inhibitor with the vaccine.
Please help with this. We can not let Medicare set a precedent with imposing such severe restrictions. If they get away with it now, it is only going to get worse for the next treatments in the pipeline – which will probably be much more expensive than Optune.
Sorry - the link in the last news blast did not work so I am resending this article!
Please help with this. We can not let Medicare set a precedent with imposing such severe restrictions. If they get away with it now, it is only going to get worse for the next treatments in the pipeline – which will probably be much more expensive than Optune.
Fascinating article on a new concept in treating cancer. Doesn't mention brain cancer but the same principle probably applies.
The thing that struck me though is the author danced around the obvious solution. He said there were doctors using the concept on their own patients and suggested that we need randomized controlled to prove it works. He missed the obvious solution - what is needed is that all cancer patients need to be tracked in an always on registry so that these "n of 1" trials are analyzed. If 1,000 doctors each try this on 5 patients and do not share the results, we just wasted 5,000 patients' experiences. If they were tracked in a registry, we would have the answer.
The presentation will be webcast live! See details below.
This is mostly for health care professionals. It will be at a much higher level than the type of conferences that we have that are targeting the patients and families. However, it is one of my favorite conferences. We get to see a lot of new ideas and to meet the people doing this exciting work.
A huge thanks to Bruce Blount for organizing this yearly event for us. It was at a gorgeous winery - my wife and I participated and had a great time!
The proceeds from the event will be used to help us fund a very special pediatric brain tumor research project!
Even though this is not for brain cancer, I am sending it in the news blast because it involves the same technology as Optune. This shows it works for other types of cancer! Great to see tumor treating fields is applicable to other body parts!
The hysteria of the financial markets would be funny if it wasn't so serious. Tocagen announced that the interim analysis result was that the trial will be allowed to continue to the final readout. The money people took that as a failure and wiped out 1/3 of the value of the company in 1 day. In reality, nothing changed and the chances of success are the same as they were the day before. There are 3 possible outcomes to the analysis:
1. The data for Toca 511 is worse than for the control group in which case the trial would be stopped and declared a failure.
2. The data is so much better than expected that they stop the trial and try for FDA approval.
3. The data is about what is expected in which case they allow the data to mature so we get a good reading on how well the treatment works.
Keep in mind that we expect the immunotherapies (from experiences with other cancers) to work on a relatively small % of patients, but the benefit is that when they work, they usually work miracles and achieve long lasting benefits - something we just do not usually see with Glioblastomas. I have already seen a few long term survivors from the early Toca 511 trials.
This can result in the median survivals for the treatment group to actually be the same as that for the control arm - but the real benefit is in the long arm of the survivors. The median survival is defined as how long the middle person in the group survived. In this case with 403 patients enrolled it would be the average of the patients who died number 201 and 202. The analysis was based on 193 deaths, so the median was not even reached yet. It would have taken an unexpectedly large improvement to trigger a stoppage of the trial at this point.
In summary - this is NOT bad news. It is what was expected. I still feel that the treatment is valuable and will get FDA approval. Once it is approved, we can then easily experiment with ways to make it work better - in various combinations - so the majority of patients are helped. But before that happens, we still need to get each building block of the ultimate cocktail to get approved and be made available.
A huge thank you to the volunteers who organized all of our fundraisers. Fantastic job. We are going through a bunch of grant applications and will give out all of the money raised within the next few weeks!
Sad to say that due to a death in the family of the organizer, our Salt Lake City event set for this weekend has been cancelled and turned into a virtual event. Visit the walk website for details. Everyone who signed up for the event was notified by email, and anyone who wants a refund follow the directions in that email.