This is an exciting project with potential for a breakthrough in the treatment of Glioblastomas. This experiment is in mice and if successful will be quickly translated into a human trial. Thanks to the donors who made it possible for us to fund this grant and our medical advisory board who worked over the holiday to get it approved quickly!
The drug is in clinical trials by itself now - delivered at the time of surgery for recurrent Glioblastoma. https://clinicaltrials.gov/ct2/show/NCT04608812
First - a thank you to the many people who have donated! We had a bad year with fundraisers and would like to ask you to get your friends and families to make a donation!
This is a very important webinar - not just for patients and families - but brain tumor doctors and researchers will be interested in this one. It may change the way we approach the treatment of brain tumors!
We have run out of funding and the copay program will remain closed until we get enough donations to the program to reopen. You can make a donation at virtualtriasl.org/donate and specify it is to be used for the copay program if you want to help us reopen the program! Note that only donations that are specified for the Copay program can help us reopen the program. If no usage is specified, 100% of donations go to brain tumor research!
Note - the program actually has 3 spots open right now - if you already started filling out the application, send it in today. We will process them in order until we run out of money. They will be filled by tonight.
This study shows that the tumor recurs further away from the primary tumor when using Optune than without Optune. The significance of this is that the new tumor grows in areas that have a low dose of tumor treating fields. First - this proves that Optune has an effect - it prevents the regrowth in areas of high field strength. However, it also points to the fact that other treatments are needed along with Optune to prevent recurrences - or the arrays have to be aimed differently to cover the areas more likely to get a recurrence.
This is one of our most important webinars! Dr. Dun explains his ideas on how to put together a cocktail approach in the most scientific way. He focuses on a tumor called pediatric diffuse midline glioma, but the methodology should apply to any type of brain tumor (or any cancer for that matter). I think that these methods used will lead us to the right cocktails quickly!
They found that 96% of patients with high grade glioma sugger from the side effect of moderate to severe fatigue. Unfortunately, this randomized trial failed to find any benefit for the drug Armodafinil (Also known as Nuvigil).
This is one of our most important webinars! Dr. Dun explains his ideas on how to put together a cocktail approach in the most scientific way. He focuses on a tumor called pediatric diffuse midline glioma, but the methodology should apply to any type of brain tumor (or any cancer for that matter). I think that these methods used will lead us to the right cocktails quickly!
This is a new treatment for brain tumors. We, The Musella Foundation, gave a grant for the preclinical work needed to get the trial going! They have very impressive preclinical results using the drug Gallium Maltolate and will now try it on recurrent Glioblastoma patients! I wish them luck.
The investigation is ongoing but it appears that researchers intentionally manipulated their data to get a positive result in an experiment designed to show a way to overcome immune evasion in medulloblastomas. If true - this can not be tolerated. It could have led to unnecessary deaths of patients in trials, and a huge waste of resources trying to use their methods on kids. I post this here in case anyone was considering using this information for a treatment plan.
This is the largest quality of life study on Optune. Earlier studies focused on the early part of the cancer journey where concerns such as irritation from the arrays or the hassle of shaving the head and carrying around a device held down the quality of life benefit of Optune. However, this study points out the obvious - what I have been saying for years: the most significant quality of life benefit is the ability to walk, talk and think for longer periods of time. This study shows that by extending the progression free survival time, you keep the quality of life high for longer period of time. Other studies have shown that Optune increases the progression free survival time and the survival time - so it makes sense that using Optune will allow brain tumor patients to experience higher quality of life for a longer period of time! This study had many patients out a long time since diagnosis that have not had a recurrence and they maintained quality of life a lot longer than we common in the pre-Optune era!
Fantastic news! The Glioblastoma Foundation is going to start manufacturing Lomustine and selling it 90% cheaper than the current pricing! They also will have Medicare pay for the drug, making it easily affordable to everyone! Huge win!
This is a new way to treat brain tumors. The patient drinks a dye - they did not say which one but it sounds like Gleolan - which binds to the tumor. Gleolan is fda approved to be used during surgery to help the surgeon tell the difference between tumor and normal brain. They then use focused ultrasound to treat the brain, and kills the tumor cells which have taken up the dye. Sounds like a good plan! They will have the first in human trial starting soon! I wish them luck. Kudos to the National Brain Tumor Foundation and American Cancer Society for funding it!
I love new approaches. They are taking a graft of the omentum (which is parts of the peritoneum along with blood vessels, fat, and lymphoid tissue which plays a role in the immune system) from the stomach area and placing it into the resection cavity. The idea being that this can bypass the blood brain barrier and allow drugs and immunotherapies to get to the tumor bed easier. Dr Boockvar points out the obvious problems of possibly feeding the tumor -but the only real way we will know if it works is by trying it in a few patients and see what happens. There are other much easier ways of bypassing the blood brain barrier, but they are transient - it is open only while the procedure is being done. This opens the blood brain barrier permanently in the area of the tumor.
This program is for patients with high grade primary brain tumors who could use help with the copayments for Temodar, Avastin and Optune (or the generics of these). We have not been open for a few months so there might be a lot of people waiting for this to open - and we may run out of money quickly. If you are thinking of applying - do it ASAP!
I have never seen anything like this before. Good work! They found a completely new difference between normal brain, benign tumors and malignant tumors of the brain. The physical properties which allow the Glioblastoma to spread into the normal brain is just a physical property of the tumor cells. We need to target that is some way. Perhaps the proteins that cause this property can be targeted, or the microenvironment can be targeted. Perhaps Optune could be used to stop movement of the cells as the movement of cells can be disrupted by alternating electrical fields, but unfortunately these fields would have to be on 100% of the time to totally disrupt the tumor cells and that is difficult with Optune. It only works while it is turned on, and most people only use it 70-95% of the time.
Xoft is a new device (FDA Cleared) that is used during surgery to treat the tumor bed with radiation. It might be able to replace weeks of external beam radiation with a single treatment that provides a higher dose to the area where it is needed with less damage to surrounding areas. Early results outside the USA look very good... in one randomized trial, median survival for recurrent glioblastoma treated with Xoft was 27 months, compared to 21 months in the group that got external beam radiation.
This applies to England and Wales. NICE is the "National Institute for Health and Care Excellence" that determines what care you can get in those countries. The new guidelines are a good start, but do not go nearly far enough. They do say adults with high grade gliomas should get Gleolan to improve the chances of a total resection. That alone can bump up the survival rate. However, they dropped the ball by not saying all needed treatments should be covered. For example, Optune is not available in England yet. And Optune had the best result of any reported phase 3 trial for Glioblastoma. Our biggest challenge in the USA is getting coverage for off label drugs and access to experimental drugs. NICE could have taken a stand to speeding up the search for the cure by allowing these in England but they did not.
xDECIDE is the new portal for cancer doctors to use to manage their patients in the xINFORM patient portal. They can invite patients just by entering the patient's name and email, and xCURES does all of the work to get the patient's information into the xINFORM portal and organize it in a way that makes the doctors' lives much easier. It then gives you a list of treatment options, which can be clinical trials, approved treatments, off label, or experimental treatments under right to try or expanded access, alone or in combinations, along with the rationale of why it is recommended. There is no cost to the doctor or patient. Worth a few minutes to watch the video then sign up and try it on some of your patients! You can track your own combinations using this platform and share the combinations with your peers. The system learns from every patient, so if your combination looks good, it will be offered to others so we can prove it works!
For patients - it shows why you might want to get your own xINFORM account and share it with your doctor!
Disclaimer - I am very proud to say I am a founder of, own stock in, and am a paid consultant to xCURES and have been involved in this program from the start - It is amazing how everything is coming together so quickly and cleanly. This is the path to the cure!
This is Dr Patrick Wen's thoughts on the CheckMate-548 study. Dr. Wen is one of the brightest doctors in the field and I highly value his opinions. His conclusion: for Glioblastomas, newly diagnosed or recurrent, with or without MGMT methylation, and regardless of PD-L1 expression, adding nivolumab (Opdivo) to Temodar (and radiation for newly diagnosed) resulted in no improvement. He thinks the path forward is to add in another treatment that makes the tumor susceptible to the checkpoint inhibitors. I agree completely.