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I have changed my mind on this topic. I now support the bill 100% and encourage you to call or email your representatives and ask them to vote FOR this act! Go to https://www.house.gov/representatives/find-your-representative to look up your representative. Let me know if you send a letter or call.
From our friends at Tocagen. Dr. Lovely earned her PhD at the University of California San Francisco (UCSF) School of Nursing focusing on symptom management and brain tumor patient care.
This is from our friends at Oncoceutics and Jack's Angels Foundation. Please contact your representatives and ask them to support this bill to create a national DIPG awareness day. (DIPG is a devestating brain tumor usually found in children)
From our good friends at the End Brain Cancer Initiative!
Please fill out our survey on this topic! https://virtualtrials.com/surveyresearch.cfm
This is only in lab rats, but looks very promising. They did note that the treatments caused death because of too much swelling in a small number of the rats - that will have to be watched and treated early when they start in humans, but this has the potential to be a huge breakthrough.
Fascinating. We get this question all of the time. The answer is it takes about a year for the gbm to grow to the size where it causes symptoms and you notice it. And there is a big gain from removing 99% of the tumor compared to 95%. If they only remove 50% of the tumor, it will grow back before the surgery heals.
I did not see research results but the methodology looks very interesting
This brings up a very important point. Every day we see an article claiming a breakthrough. Us old pros know it is just hyperbole - not really meant to be taken literally. They are just trying to get their treatment noticed and if they told the truth in the headline, nobody would look at it. But for the new people here, who are desperately looking for anything to help their loved one with a brain tumor, it is very dangerous.
The website noted below digs into these stories and exposes the truth. I like to think that is what we do here also with these editorials about the articles. It gives perspective. Same with our online support groups: https://virtualtrials.com/lists.cfm If you find something online that looks interesting for brain tumor patients, share it with one of the online groups.
Carboxyamidotriazole Orotate is an experimental treatment, given orally. It is made by Tactical Therapeutics. Visit their website at
http://www.tacticaltherapeutics.com/cto-overview/ for details on how it works. Looks promising but too early to tell for sure.
Nothing we did not know before, but now this impressive journal has an article that says Optune should be the standard of care for GBMs. This should help get insurance coverage for those few plans that still deny it.
We just awarded our 1,000th grant (of $5,000 each) to a brain tumor patient in need of help today!
I know most people would rather donate to brain tumor research, but there is a huge need for this type of help also.
We give you a choice when making a donation - you can pick where your donation goes!
This study definitively proves what we already knew, that you do better if the entire tumor is removed. At a recent FDA advisory committee meeting I attended, the FDA said they did not believe that is the case. Next time they will believe this study.
This is a big advance in brain tumor treatments. This new device allows the delivery of drugs to precisely where it is needed. Many clinical trials using convection enhanced delivery failed because the drug did not get to where it should have been. Perhaps those trials should be redone using this system.
Interesting new drug - apparently did well in phase 1 testing.
Maybe it could! This person identified the collaboration between the Musella Foundation and Cancer Commons as one of the things he would fund if he raises all of that money!
It is way too early to say it stops these pediatric brain tumors but this is a new idea that hopefully will start human clinical trials soon!
This man asked my opinon, and I told him: The Virtual Trial. We are expanding our virtual trial concept, collaborating with other organizations, and now have a team of experts who can help find the best treatments, track the outcomes, and learn from every patient.. Go to virtualtrials.com/ask for details.
