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We gave a $50,000 grant last year to this researcher and the project is looking good. He wanted to expand it to include Medulloblastomas, which is a mostly pediatric brain tumor type. Hopefully, if succesful, it should also help many other tumor types.
This is an old drug - CCNU - but a new capsule size was just approved by the FDA. It is commonly used in combination with Avastin. The standard dose is 130mg/m2 which for a 200 pound 6' tall person works out to about 275 mg... They already had capsules of 100mg, 40 mg and 10mg. SO I guess this allows for finer control of the dose - however, some insurance companies charge a copay on each capsule size.
This is a new clinical trial for recurrent GBMs. This is a new approach, with a new target. It is an oral medication. See oncoceutics.com/therapeutic-approach/
for details on the mechanism. I will be watching this closely - as the Musella Foundation gave them a research grant a few years ago to help do the preclinical work on this new drug - which came out pretty good!
This talks about a patient's experiences with the Toca 511 clinical trial
This trial is available at many locations. See clinicaltrials.gov/ct2/show/NCT02392078 for details
New trial for Medulloblastoma. Also may be another tool to use if a path report for any tumor shows a high overexpression of the target, PIGF
I saw the new system, and it looks like it will make using the system a lot easier!
This article shows that intra-arterial administration - either with or without disruption of the blood brain barrier may be too toxic to use.
This is a controversial topic in the brain tumor world. Studies have shown that most or all gbm samples contain this virus. However, other studies show that few or none have it. That difference may be related to the ability of the lab to detect it. There needs to be a standardized way of detecting it so we can settle that once and for all. There has been a human study of an anti CMV drug (Valcyte) that has shown very good results, but the study was questioned by others saying it wasn't designed properly. My thoughts are we need more studies on anti-CMV therapies, but in the meantime it might be worth adding it to the planned treatment regimen. It would be best to track patients who try this in our brain tumor virtual trial so we can quickly tell if there is any effect - good or bad.
Looks like we need more research on this. Very interesting
Thank you to the Spagnoletti family and friends who are helping us raise money for brain tumor research!
From our good friends at the Florida Brain Tumor Association
We funded yet another pediatric brain tumor research project. This time, we partnered with the Gray Matters Brain Cancer Foundation to pay for this grant!
The drug they talk about is already approved for other diseases so if this research pans out, it will be able to have an immediate impact! Will be watching this closely.
As if we didn't have enough things to worry about: this report says about 1/3 of patients with a gbm developed blood clots. This topic needs more research to weight the risks vs the benefits of putting all gbm patients on long term drugs to prevent blood clots. The symptoms to watch out for are: acute (sudden) shortness of breath, chest pain, coughing up blood, fainting, swelling of the legs, tenderness of the back of the legs, and warm legs. These symptoms are an emergency and you have to see the doctor the same day. If your doctor isn't available, it is worth going to the emergency room.
From our good friends at the IBTA.
Congratulations to David Arons, JD on his appointment to CEO of the National Brain Tumor Society. I have worked with David on a few projects and he is one of the brightest and most dedicated people in the brain tumor world.
Optune is approved in the USA but experimental in Canada. The nice thing about this article and video is how this man is able to continue working while using the Optune device. He doesn't try to hide it and he has the most public of jobs - being a teacher. He is able to travel and teach while using it.
The biggest reason I hear for people not wanting to use this treatment is they are afraid of how it would look to other people. Some people hide it with a wig, hat or do-rag. Search youtube for "optune" to see many stories from patients and how they handle using the device - some hide it well but others don't try to hide it.
My response is to ask: what is worse: having to be seen walking around in public with something on your head or not being able to communicate and being pushed around in a wheelchair? . This treatment allows gbm patients to function longer. On average, about 25% longer, which translates into an almost 50% increase in the chances of being alive in 2 years. Some people do much better and this may buy time for other treatments to work. I routinely see people refuse to use it when they are doing well because they do not like the way it looks. Then as the tumor progresses and they develop neurologic problems, then they realize how serious a gbm is and want to use it - but it is to late at that point. The best time to start it is right after radiation is over.
This may be the most important article of the year. It is the report on the phase 3 clinical trial for newly diagnosed GBM trial comparing Optune and the standard of care vs the standard of care alone. Excellent results - best of any large phase 3 GBM trial. Better than the results that made Temodar the standard of care. The trial was stopped early by the FDA when they saw the Optune group did so much better than the control group, and they allowed the control group to cross over into the treatment group. This is the first time (that I am aware of) this happened for brain tumors! Hopefully this will remove all doubt that Optune works and should be included in the standard of care for newly diagnosed gbm.
Brilliant detective work. May offer hope to this specific subtype of tumor.
Describes how tumor treating fields work and why it is important to use it as much time as possible.
