This program can help you with the copayments for Optune, Avastin, Gleostine or Temodar. Go to braintumorcopays.org for details!  If you have high copayments, qualify,  and could use the help, do not be embarrassed to ask for help.  That is why we are here - to help reduce some of your stress!  We know costs add up quickly and we are happy to try to help.

 This is another view on the DCVAX trial that we have been talking about for the last few weeks.  They mention an 18 year GBM survivor!  They are recommending that patients who have surgery now freeze the tumor so when DCVAX gets FDA approval, the vaccine can be made.   Or - they mention you can get it in the UK now (but have to pay out of pocket).  

 These researchers may have found a new approach to treating tumors.  They think targeting the protein (BRD8) that controls the P53 gene will lead to a  major breakthrough. They tested it in mice and it worked for the mice. Next step is more preclinical testing, then human testing. It is too early to get too excited, but I think the key to finding the cure is to first understand what goes wrong to make the tumor grow, and attack that instead of randomly trying to kill tumor cells.

 Focused ultrasound is one of my favorite new experimental treatments for brain tumors. It can be used in many different ways. This webinar will focus (pun intended:) on using it for sonodynamic therapy, which is similar to photodynamic therapy but uses sound instead of light.  A dye is administered to the patient, which collects mostly in the tumor cells. Then focused ultrasound is delivered to the brain, using an external device (no cutting, no bleeding).  The ultrasound excites the dye molecules which kills the tumor cells and leaves the normal cells alone.    That is the theory - this trial is testing. If it works out, this will be a major breakthrough in the treatment of tumors.  This simple noninvasive procedure can be repeated when / if the tumor grows back to keep it at bay.   I would hope that combining a few relatively non-toxic therapies might lead to the cure - in a way that doesn't torture the patient!

 I did not know this!  They are saying that the tumor cells talk to each other and are organized in a network.  This communication drives the growth of the tumor.  It opens the door for new ways to treat patients. I wonder if Optune could disrupt the network?

 Very impressive results, with no major side effects.   We need the FDA to approve treatments like this even though there is a small number of patients and it was not a randomized trial.

 Unfortunately this vaccine trial  failed.  

  We ran out of money so the program is closed to new and renewal applications. Of course we continue to pay claims for those already approved.   So far this year we awarded 283 grants of up to $5,000 each. The program works by donations - so we never know when we will gather enough funds to reopen this life saving (and stress reducing) program.

 I am so sorry that so many people had trouble watching it live.  Our webinar room only holds 500 people, and we usually use Facebook for the overflow.  We hit the capacity of 500 in our zoom room, and we were streaming the video live on Facebook, until someone reported the video to Facebook as a violation of their terms of service and Facebook cut the feed and deleted the video.    

Tonight’s' webinar should be great!  Dr Liau published the results of the DcVax trial recently.  Read that article before watching the webinar.  There has been some misinformation spreading about the trial. Hopefully tonight's webinar will clarify everything and show that this trial was a complete success.  It is the story of the year and a breakthrough brain tumor treatment!

 This is the results of 2 trials of the drug Onc-201 for DIPG and DMG.   Bottom line is this oral drug with minimal side effects doubles survival. This is in a tumor type that really has no effective treatments.  This should be made available now on an emergency basis. This is why we need the Promising Pathway Act. If this bill was passed, we would have had approval of Onc-201 years ago. The current system is outdated.

  The program will be open probably for a few days but we never know how many applications come in.  Might close sooner.   We have enough money (thanks to those who donated!)  for about 15 grants (of $5,000 each).  Do not be shy about applying - if this can releive some of your stress - it is worth applying!

 People always ask me why Northwest Biotherapeutics' stock didn't skyrocket when they released fantastic news that their phase 3 clinical trial was a complete success.  It made people think there was something wrong,  and unless you read the full publication along with the supplemental materials which clearly answers all of the negative comments floating around about the trial, you might be tempted to believe some of the misleading articles that were published about the trial.     This article talks about the main reason why the stock is so low and has gone lower every time the company announced good news.  It is probably  (innocent until proven guilty) because of stock manipulation by a few greedy companies who care more about money than your lives.    This scam has delayed the approval of DCVAX by years - killing many people who might have been saved.   Hopefully this ends now, and we can get back to finding the cure!

 This article talks about a new way to get drugs into the brain.  CED is convection enhanced delivery, and it has been used for a long time as a one shot deal.  Now this system can be used over time, in this case 4 treatments once a week for 4 weeks.  Topotecan is a drug that works great against brain tumors in the test tube, but doesn't cross the blood brain barrier so it doesn't work when given IV.  These researchers tried it with this new form of extended CED and early results look promising. All 5 patients had significant reduction in tumor size. That is great news because the FDA has said it would approve treatments quickly if they had a high response rate.  Topotecan is already approved, and this CED system is not a permanent implant - it is easily removed.  Once it is approved we can try all sorts of drug cocktails personalized to the biopsy.

 It took way too long but Optune is now approved in Canada!

 I (along with my team:) published an article in the journal: "Artificial Intelligence in Medicine".  It is about our brain tumor virtual trial. We compared our data to the data from 7 randomized trials around the same time and found that we could have predicted the outcomes in 6 of the trials by using our data. For the 7th trial that was close but not perfect, we went back to look why we missed - we had different patient populations - they had recurrent GBM patients who never had chemotherapy before which is really strange. All of our patients failed Temodar up front, so when we looked at recurrent patients, we got a different readout.   Bottom line, what we did for basically free probably could have replaced trials costing millions of dollars.

 xCures is running an expanded access program of this drug for any type of cancer that has  MAPK pathway-altered solid tumor(s), including but not limited to KRAS, NRAS, HRAS, BRAF, MEK, and ERK mutations who have incomplete response to or have exhausted available therapies.    Low grade gliomas have a high chance of having this mutation. Glioblastomas, Pancreatic Cancer, Colon cancer, Ovarian and more types of cancers also sometimes get this mutation. Check your pathology report for it.

 At this time of year we like to reflect back on the year so far and share the highlights with you!  I also need to ask for donations.   The highlights letter linked below is part of a package we send out once a year by mail  to all of the people who have donated to us in the past - where we also ask for more donations!

I hate to ask our members for donations - I understand most families dealing with brain tumors have enough problems, but if you are in a position where you can make a donation - please do!  Ask your friends to donate in your honor!  If you can't - do not worry about it - I understand.

Have a Happy Thanksgiving!

 This is completely unacceptable to the brain tumor community. The FDA is taking it upon itself to use it's regulatory flexibility to change the way accelerated approval works. The article hints that this will add more than 3 1/2 years to the process of getting approval.   The cause of this change seems to be a mistake they made with approving a drug for Alzheimer’s disease.   There are a few drugs that should have already received accelerated approval for brain tumors and I am being told the FDA told these companies they couldn't even apply yet, and that they want a final phase 3 placebo controlled trial fully enrolled before the FDA would accept an application for accelerated approval. This will kill thousands of patients needlessly and reduce the number of treatments available to us.  This is the same FDA that told me they do not have the regulatory flexibility to grant accelerated approval to a treatment that has been shown to work well in phase 3 trial, but only in certain subgroups that made sense.  They wanted a repeat of the phase 3 randomized trial in those  subgroups, which makes perfect sense from a scientific viewpoint but wound up making the company go out of business, forcing us to lose the treatment forever, and probably killing 1,000- 2,000 brain tumor patients a year needlessly.   

I am working on a fix. I invite other foundations who are also interested in this to contact me.  My original plan was the promising pathway act, which would create a new conditional approval pathway to allow treatments to get approved after a phase 2 trial, but require all patients who use the drugs approved under this pathway to participate in a virtual trial until efficacy was proven, or failure was shown.   That bill is still in Congress - so it has a chance - but I have thought of another possible way forward. Change accelerated approval to require all patients who use drugs approved by the pathway to participate in a virtual trial, instead of requiring the confirmatory trial. This would go on until we either proved the drug works or not.  This would give us more knowledge as we learn from every patient.  

 The Children's Brain Tumor Network (CBTN) is a multi-institutional international clinical research consortium created to advance therapeutic development through the collection and rapid distribution of biospecimens and data via open-science research platforms for real-time access and use by the global research community.  We are proud to be a foundational partner!