We have run out of funding and the copay program will remain closed until we get enough donations to the program to reopen.  

 I have been interested in this drug for a long time. I met the inventors of this drug and gave them a research grant back in 2013. I am very excited that the company opened an expanded access program for pediatric patients with Diffuse Midline Glioma and DIPGs.   There is a huge unmet need for these tumor types, and we badly need more treatment options.

As I mentioned many times before, I helped start xCures and am a paid consultant to xCures.   They are revolutionizing how expanded access works. In the past, most doctors did not like to participate in expanded access programs because of the extra time needed for paperwork and to work out logistics.   xCures takes over most of the paperwork and logistics now, and helps the doctors with the little paperwork that they have to do. 

In the past, expanded access programs did not help speed up drug approvals. Now, xCures monitors the patients in expanded access programs as a virtual trial, gathering real world evidence of how the drug works. Best part is programs like this accept most patients with the specified tumor types so we really get to know how the drug performs.  This is in contrast to clinical trials that pick the patients that would make the drug look best.   This real world evidence can (and has) been used to get FDA designations and as part of new drug applications to support the evidence from clinical trials.

And best of all, xCures makes it much easier for the patient.  First, our patient navigation program (Musella Foundation, Cancer Commons and xCures) can help find the best treatment options for each patient - including expanded access programs, then we do a lot of the work needed to actually enroll and get the drug.   

 xCures ran the first expanded access program for Onc-201, which was a big success, and is currently running another expanded access program - Ulixertinib, which is for any type of cancer (including braintumors) that has mutations in the MAPK pathway (KRAS, BRAF, NRAS, HRAS, MEK and ERK mutations).    They are also running the  Patient-Centric Platform Trial for Precision Oncology which is the basis of our patient navigation program!   

 This is very impressive data in recurrent low grade glioma. It is hard to achieve a 50% reduction in a tumor with an oral drug and they did it in 64% of the patients, and 3 patients had a complete response.  This is the type of drug that needs to be approved quickly.

 This is a positive study - the high dose group had a median overall survival of 15 months with 55% alive at the 1 year point, in recurrent glioblastoma which is at least double what I would expect from this group that is made up of non resectable recurrent IDH wildtype GBM.  Great work!

 This is one of my favorite experimental treatments.  It is too soon to tell how well it works, but the concept is fascinating.  We had a webinar about it recently. See https://virtualtrials.org/video2023.cfm?video=202301 for the webinar on this technology   Dr Schulder is a friend of mine, and he has been on the Musella Foundation's Medical advisory board for over 25 years and I consider him one of the best brain tumor surgeons around. I have sent a few family members for him to treat.  This treatment is worth considering for people with a recurrent high grade glioma  (Glioblastoma, Anaplastic Astrocytoma, Grade 3 or 4 astrocytoma or high grade Oligodendroglioma and more)

 Brilliant work - combining two drugs that already are in clinical trials.  Still has to be tested but I love the concept.

 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 to see if it really works. 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!

 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!