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This is from our friends at the David S. Zocchi Brain Tumor foundation. They run a free summer program in NJ for kids and teens who are dealing with a brain tumor in the family.
From our friends at Cranium Crusaders
This brings up a delicate subject.... what happens to our online affairs when we die or are incapacitated for a while?
Google set up a new free service that lets you tell them what they should do with your stuff in google accounts (like email, videos from youtube, photos, etc) if they don't hear from you for a while. You can set the time period and tell them to delete everything, or to let your loved ones get access to it. They will even text you or email you at an alternate email account before doing anything if they don't hear from you for a while.
I know we hate to think about such things but planning in advance can prevent problems later on. When I had my heart attack a few years ago, I thought I had a good succession plan in place for the foundation. I didn't realize that all of the videos in our brain tumor video library would be deleted if nobody logged into my account in 9 months. I never thought about that or the many other services google provides us.
While on the topic - just a reminder that we all (not just the patient but the caregiver also) should have our wills up to date, power of attorney and a living will (also known as an advanced directive) - which is a legal document that a person uses to make known his or her wishes regarding life prolonging medical treatments.
Amazing story... Having 1 ten year survivor could be a fluke.. but 2 ten year survivors is very impressive.
We added more events to the National Walk to End Brain Tumors!
This is one of the most important articles of the year. First, it shows that adding Temodar at the same time as radiation will double overall survival times compared to using radiation without Temodar.. We already knew that but it is nice to see it confirmed. The new part is that using a dye called 5-ALA at the time of surgery (that allows the surgeon to see where the tumor is) adds another 3.5 months to the average survival time.. and in those cases where it allows for a complete resection, it adds another 11 months.
This dye is approved in Europe and used as a standard treatment for years. Getting it approved here in the USA would be a big step foward. 3.5 months might not seem like much, but it can buy the time for other treatments to work.
Neuroblate is the new name for what was called the AutoLLT system. It is an fda approved treatment for brain tumors which uses lasers to directly kill tumor cells. This reports very good results on a small trial of patients with recurrent gbms. (Remember - small trials can give an indication that a treatment is effective, but the larger the trial, themore sure we can be that something actually works. There were many cases where success in small trials did not pan out in larger trials).
Having said that, this is a new option for patients with recurrent GBMs. I went to a lecture on it recently where they showed some pretty amazing before and after MRIs as well as results for other tumor types.
The Musella Foundation is not involved but this is always a great event.
Although the Musella Foundation is not affiliated with this event, I am including it because it should be of interest to our members in Leveland!
Nimotuzumab is an antibody againt EGFR created in Cuba. It is approved in most of the world, but I think it is not yet approved in the USA. EGFR is a good target - it is only found in about half of the brain tumors, but it is the worst half. According to wikipedia, it is also being used for recurrent or refractory high grade malignant glioma, anaplastic astrocytomas, glioblastomas and diffuse intrinsic pontine glioma.
This was not a controlled trial so we do not know how kids with similiar tumors would have done on other treatments, but it is worth watching.
Fotemustine is a chemo drug in the same class as BCNU and CCNU. It is available all over the world except the USA. This wasn't a controlled trial so we don't know if it is better than the chemo drugs we have available, but it does show some activity in the elderly after failing with Temodar.
The headline is a little overstated, but this is worth looking at. Boron Neurtron Capture Therapy is an old treatment where a boron compound is given to the patient and it accumulates in the brain tumor. A neurton beam is then aimed at the tumor and it reacts with the boron to kill the cells that have taken up the boron and leave the other cells alone.
The problem was that the boron compounds used were not getting into all of the brain tumor cells and some were getting into normal cells. It was a small improvement over standard radiation therapy.
Now there are better ways of getting the boron into the tumor cells and sparing the normal cells so they are trying again.
This tests the idea that using a different schedule for Temodar 21 days on and 7 off, after Temodar on the standard schedule of 5 days on and 23 off, may work.. In this study - it didn't.
This is an interesting situation. The companies that make competing radiosurgery tools somehow managed to first get Medicare to pay double for one tool, then the other manufature managed to get them to reverse the decsion and pay the same fo the procedure no matter which tool is used.
I do not know how much these things cost - but I would hate to see us lose access to one of the tools due to these cuts. On the other hand, I always felt there should be no economic incentive for a doctor to use one tool over the other. Ideally the decision should be based on what is better for the patient than how much they will earn for using one over the other.
IF you host a walk for brain tumor research and it isn't on this list, contact us at musella@virtualtrials.com to join with us. There is no cost at all.
Obviously that is a big claim and there is no proof yet that it works on people, but they do mention brain as one fo the types of tumors in mice that it worked on, so there is some hope. I wish them luck and will keep an eye on it.
Nice article about the Novocure system.. unfortunately you need to subscribe to get the full article - or sign up for a free trial to see it..
We gave out $790,000 so far!
Boy does it go fast. There are so many people who need it.
Whole brain radiation is traditionally used when someone has a metastatic brain tumor. This article shows a small study which shows a limited field may be just as useful, with less side effects. This is not controlled trial where they randomized 1/2 of the patients to involved field radiation and compared them to the half who got whole brain, so although it looks encouraging, so I would love to see others repeat it to make sure it is valid. But it is something to consider.
