Brain cancer patient beats odds with experimental treatment 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.
IBTA Newsletter 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.
Recurrent venous thromboembolism in glioblastoma. 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.
