The Musella Foundation gave a $30,000 grant to help jumpstart the development of this drug - OKN-007 - back in 2013.  This is your donation dollars hard at work!

  They have been running a clinical trial of the drug for newly diagnosed as well as recurrent Glioblastomas.  Early reports look interesting https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.2538  for recurrent glioblastoma, the median progression free survival was only 1.4 months but overall survival was 21 months.  There was no control group but historically, patients with recurrent glioblastoma rarely live over a year. 21 months would be outstanding.

They will soon be starting more clinical trials, for diffuse midline glioma, DIPG, high grade gliomas and others.  They just announced that they will soon open an expanded access program, even before these new trials start. May be worth considering.

 Well deserved!  Dr Monje is one of the best brain tumor doctors in the world, as well as one of the nicest people! So happy for her!

 This project lays the foundation for a new way to treat all cancers.  If successful, the methods could be used for any targets.

 I think that all patients should sign up for this service. It is free to you (and you can get a $100 gift card if you do the survey after getting the options report).  It is useful even if you do not need to make a decision immediately - the records will be in place and organized so if a recurrence happens - you are not left scrambling to find and organize everything.

1. It will help you organize your medical records.  xINFORM takes medical records as PDF files and extracts the important information into a structured format that is easy to read.  xINFORM will automatically update the records as needed (if you give your permission - otherwise you can upload the records periodically).   It then provides you with ideas for treatments. These can be clinical trials, experimental treatments, off label cocktails or standard treatments.  You can update the list of options whenever something changes. 

2. It helps your doctors - they can see at a glance the important information about your medical history, and our report helps narrow down the hundreds of possibilities to a managable few. And finally if you and your doctor decide to pursue a treatment via expanded access or under the right to try laws, our team can help with the paperwork and phone calls - saving your doctor a lot of time and aggravation!  Your doctor can get access to a different xCures program where they can manage multiple patients through the process if they like.

3. Your participation helps all other patients with a similar case. We observe what treatments you do and the outcome so we can identify treatments that are working - and those that are not working.  Every individual is different of course - but in the case of cancer - playing the odds  of trying what worked better in similar cases is better than finding an article on the internet and trusting it.

 Unfortunately we had a scheduling problem and have to cancel tomorrow’s webinar.

The webinar was going to be on Kiyatec's newly approved test called 3D Predict.  I wanted to tell our patients about the test, and we will have the webinar as soon as possible. This test is the best way to tell if Temozolomide is going to be worth using or not in your particular case. It is more accurate than MGMT testing. Of course it is not perfect, but just better than MGMT testing. It will also test other drugs and tell you which may work the best. 

It requires a tumor sample, so f you are going to have a surgery, it is worth considering asking your doctor about ordering this test. For details see http://kiyatec.com/

 This is the first use of neural stem cells to help deliver an oncolytic virus. Early results look good, but of course need to be studied in a larger trial!

 Both webinars this week are very exciting. Note the new dates and times. We are doing a webinar on a Friday afternoon to see if we can get better participation.

The first one, on xInform, is part of our patient navigation program. Kenny Wong will speak about the new version of xInform software which gives patients a graphical representation of their cancer journey as well as a customized report on the best treatment options for them.     You and your doctor decide which treatments to pursue - we just supply the ideas - we do not do any actual treatments.  Since this is a new program, xCures is offering a $100 gift card for feedback to participants who go through a 15 minute survey after getting their report!    This service is free to our patients.

The second webinar is on KIYATEC's new test that can tell how the commonly used treatments will work on your tumor. It is more specific than the MGMT test. I have seen the presentation and it is definitely worth watching - and worth ordering the test which is now available!

 This is an exciting new trial, where they are going to try to increase the effectiveness of Optune by drilling 5 small holes through the skull over the tumor with the intention of increasing the field strength of Optune where it is needed the most.  It is a randomized trial for people with recurrent glioblastoma. Half of the patients will get the remodeling surgery and half do not. All of the patients then get Optune plus whatever their doctor thinks is best.

Note that the article has a typo in the clinical trial identifier. For details go to: https://clinicaltrials.gov/ct2/show/NCT04223999  (They left off the last 9 in the NCT number!)

 Sept. is child cancer awareness month. This article by a friend of mine talks about the loss of her daughter, Vivienne, and ways you can help speed up the search for the cure. She mentions the Promising Pathway Act. I think getting that law passed is the #1 most important thing we can do to speed up the search for the cure. And it doesn't even cost you anything. Just go to https://virtualtrials.org/activism.cfm#/1/ and send a letter to your representatives. Only takes a few minutes. Then send it to all of your friends and family to do. We need a LOT of emails to make any difference.  If you have any political connections, talk to me about how we can use them!

 I am one of the authors of this paper on how the medical decision making process should be handled.

 This is an overview of the major phase 3 clinical trials for newly diagnosed Glioblastoma.    Unsurprisingly, TTF  (Tumor Treating Fields, also known as Optune) had the best results of any phase 3 trials for Glioblastoma.  The most upsetting thing is that other treatments that looked good are not only not available but have been discarded and are no longer being developed. One such treatment is ICT-107. This was a therapeutic vaccine that did amazing in some people but it failed to hit it's main endpoint on a randomized phase 2 study.  Some analysis of the trial showed that it really was a success but not as designed in the original protocol so it was deemed a failure.   As this article shows, it still did a lot better than the standard of care (this paper considers the old standard of care before Optune was added).   I am trying to get a new law passed - the Promising Pathway Act - which would let us get access to the group of treatments from this article that did better than the standards but are not available to you now.  

Proton radiation has a few theoretic  benefits over the standard photo or gamma radiation.  It can limit the radiation dose to the normal tissue better and should have less long term side effects. 

If a tumor is up against the optic nerve, Proton radiation can hit the tumor without hurting the optic nerve.   

The downside is most brain tumors are diffuse and you need to treat a border around the tumor anyway, and it is more expensive and harder to find a facility.

More studies need to be done to prove an advantage.   

This is quick and easy.    We need you to sign a petition on Change.org to help speed up the search for pediatric cancers, including brain cancers! Our friends at the Pediatric Brain Tumor Foundation are spearheading this campaign! This literally took me 10 seconds to do.  

This article talks about a new treatment in dogs that have glioblastomas. A single injection helped most dogs and 1 dog had a complete remission.  Next they will be trying it in people. I wish them luck and will be keeping an eye on this!

 This is from our friends at Pinpoint Patient Recruiting.  They do surveys and interviews to help drug companies learn about the needs of the Glioblastoma patients and caregivers.  They give us (the Musella Foundation) a donation, and you get $75 for taking the survey. Everyone wins and you help these companies understand our needs better!

 This is the results of the CUSP9v3 trial, and they are impressive. It was not controlled and is relatively small, but for patients with recurrent glioblastoma, the progression free survival rate at 12 months was 50%.    This is a combination of older non cancer drugs, along with Temodar. All are easily available and relatively safe. May be worth trying both for newly diagnosed and recurrent Glioblastoma.

 We had a good run but ran out of money.  We gave out 280 grants so far this year to patients, each up to $5,000 - which adds up to an amazing $1,395,000 (if they all use their entire grant - if not, we reclaim the money and recycle it for the next patients!)

 This is the latest version of CUSP9   (CUSP9v3)

This is a very small study so obviously has to be repeated with larger numbers but they have impressive data. Looking at the survival curve for survival, progression free survival at 12 months was 50% which is pretty good. However, of the 5 patients who lived that long, none of them did yet, so there is a tail of the curve that doesn't drop below the 50% survival point. 

This is a for a cocktail of repurposed drugs that are easily available, in addition to Temozolomide.

funding         This program is a life saver. I started it because both of my family members who had glioblastomas also had problems with the cost of their treatments.  The program is funded by donations directed to this program and does NOT take anything away from the money we raise for brain tumor research. That is a separate fund.  When making a donation, you can tell us which fund to apply your donation to and if you want to just fund research, 100% of your donation will go to brain tumor research!  You can make donations at https://virtualtrials.org/donate