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Ben is an old friend and has been researching brain tumor treatments since he was diagnosed with a GBM almost 18 years ago. He wrote one of the best books on the subject, Surviving Terminal Cancer. Half of the book is his thoughts on how to manage having a "terminal" illness and the other half is about treatment options. He updates the treatment options every year and allows us to post it on our website for free.. here is the annual update, and it includes the new standard of care for GBMs!
I love this type of project. They are trying to find why the tumor becomes resistent to treatment and how to prevent that resistence. They are using approved drugs - so if this can be shown to work in people, it can be used immediately by anyone and make a big impact.
This may eventually be used instead of Decadron for brain swelling.. without the bad side effects of steroids. The trial only showed a small improvement but may be worth trying to avoid those side effects
This article says that a gbm is not limited to the area of contrast enhancement. I have been saying over and over that we need things like Gliagen - the dye that lets a surgeon see where the tumor is during the operation. This article backs up the need.
Carbon ion radiation is used in Europe and Asia, and may have better results than the standard photon ,gamma and proton radiation we use here. The Musella Foundation has been funding a project to develop a new form of carbon ion radiation which may work even better. We are trying to help speed up the process of getting it available here.
Interesting project. I love the concept - combine treatments in a rational way to make them work better. Of course, this is only in mice, which you can not rely on to say it will work in people, but I think it deserves a human trial. This is the type of thing we can do with the the Virtual trial since both treatments are easily available. We have 5 patients who tried that combination. It is hard to say if it helped - we need more people..
This article analysed survival patterns and found that once a gbm patient survives for 2.5 years after diagnosis, the chances of dying each quarter year go way down.
This is from our friends at the FBTA. They always put on a great conference. Definately worth going to. I talk to a lot of people who do not realize how valuable these patient conferences are until they actually go to one. Aside from the educational aspect, there is a social benefit. You will get to meet many other families going through the same thing as you! You can go without feeling self concious about scars, speach problems, wheelchair, bald spot or anything. You will have a lot in common with others to make it easy to meet people and talk to people.
The Musella Foundation - in partnership with the CNJBTSG will have our patient conference in NJ in the fall. Will let you know when we set the date!
Hi. We have just partnered with Genetech and 23andMe on an amazing project that I want you to participate in! This is ONLY for ADULT patients Living in the USA, with recurrent glioblastoma (and breast, kidney, colon and lung cancer) who use or have used Avastin starting before 12/31/12. Participation is by mail and over the web. Read attached article for details!
I know it seems obvious, but this study shows that removing more tumor helps people live longer. The difference between a total resection and a sub total resection is 8 months in overall survival: 12 months vs 20 months. This is with the simple addition of a dye that lets surgeons better visualize where the tumor is. This dye (Gliolan) is approved in Europe but the FDA in the USA is dragging it's feet in getting it approved for us.
This is way too early - not in humans yet - but very interesting. Gliadel wafers - according to this article - release chemotherapy for 5 days after being implanted during a brain tumor surgery, and offers a small (but important) benefit. They describe a new way to release chemo for 6 weeks - which may help much more.
Interesting approach. Might be applicable to other tumor types
Obviously, the experiances of 1 patient does not prove anything, but this is an interesting combination. There is a trial of cetuximab for Glioblastomas, using a super selective intra arterial delivery -which allows a much higher dose to the tumor. Combining it with Avastim seems like a reasonable choice.
I love this type of thinking. It is not in humans yet but I will watch this closely. Basically, MGMT is a protien that can stop Temodar from working. It actually repairs the damage to the DNA that Temodar causes. People with tumors that have low levels of MGMT do better than people with high levels. This project tries to block the MGMT from being created, so it should help people do better.
Important announcement: the standard of care for GBMs has just been changed to include the use of the Novocure device at recurrence. For more details on the Novocure device, first view the video on our home page at virtualtrials.com then from the menu at the top of the page, click LEARN ABOUT then NOVOCURE. We have many of the research papers that were published about it, as well as a link to the list of doctors who are certified to prescribe it!
Unfortunately, this reports that the combination of treatments mentioned did not work as well as hoped.
Our friends at The Cancer Support Community needs our help - they want you to fill out a survey about the needs of families dealing with a brain tumor. Please take the time to fill out this survey! Thanks
Interesting article... talks about how the different subtypes of glioblastomas may have different cells of origin - so may need personalized treatment.
