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5-aminolevulinic acid (also known as Gliolan) is a simple dye that is given before surgery that makes the tumor visible during surgery. It has been approved for years in Europe but not in the USA yet. This study shows that there is a better chance of removing the entire tumor and patients live longer when using it. Doesn't make sense that it is not available in the USA.
This is from our good friends at the A Kids’ Brain Tumor Cure Foundation.
Don't forget that we (the Musella Foundation) also has Go Grey in May events - such as the National Walk To End Brain Tumors at Walktoendbraintumors.org , and that we need volunteers to help do fundraisers for us!
From our friends at Nationwide Childrens Hospital. Sounds like a great conference for families interested in pediatric brain tumors
Our big fundraiser for the year is the National Walk To End Brain Tumors. See WalkToEndBrainTumors.org for details. We time this round of granting so that when the money from the walks comes in, we already have approved the best grant requests and can quickly give out the money we raise! The National Walk is actually a collaboration of many brain tumor charities. The walk website shows which events benefit the Musella Foundation. Of our events, 100% of the money raised goes to research - very quickly, with the exception of our Long Branch, NJ event which also benefits educational activities.
This is from our friends at the University of Sheffield.
Sounds like a great conference.
This is a 60 minutes segment on a polio virus vaccine clinical trial at Duke. Very impressive.
We just added an event in Las Vegas! Follow the link to find an event near you.
Nice fundraiser you can do from home!
There is a new support group on Long Island.
Notable labs was created by a friend of mine. They have a great concept: they grow a patient's tumor in the lab and try thousands of combinations of existing drugs on it to pinpoint the best combination to try. They will be starting a clinical trial of it soon to prove the concept works. Good luck to them!
I usually do not list trials at an individual brain tumor center, but this one is special. These are 4 of my favorite trials, all done at one medical center, and they are also certified to use the Optune treatment as well. For more information, look at virtualtrials.com click on LEARN ABOUT then Tocagen, then Learn About and Vaccines.
I had high hopes for this trial. Previous trials that used targeted drugs against 1 target failed, so the thinking was to try targeting multiple targets. Dasatinib is active against 4 targets, and did not work. Hopefully the concept is correct and this mix of targets was wrong.
Great results. Of course it is too small to prove it works but it looks like it has no side effects and may have a huge benefit. Hope the larger trial opens soon. Perhaps the tetanus vaccine could help boost the other vaccines in trial now also. There will be a segment on cbs evening news tonight about it
The NCCN guidelines define the standard of care in the USA. Insurance companies- including Medicare - use the guidelines to deny claims for treatments that are not given a good rating by the guidelines. We have that problem with Optune (which used to be called the Novocure Novo-TTF100a system and the NCCN refers to as 'alternating electric field therapy'). The NCCN guidelines for GBM originally gave this treatment a fairly good rating - at least as good as many other treatments in use. This was reasonable, as the large trial for recurrent GBM directly compared tumor treating fields to all of these other treatments and did at least as well or better. Then at the last update, the NCCN unexpectedly lowered the rating to the worst category - even though all of the research articles that came out from the time they first listed it until this update were all very positive - not one negative report. Just at that time, I met with Medicare to discuss coverage of this treatment, and they pointed out that the NCCN lowered the rating and used that as an excuse not to approve payment.
Since that time, the groundbreaking results of the large phase 3 trial for newly diagnosed GBM patients came out with a 50% increase in the 2 year survival rate compared to standard therapy. The FDA halted the trial because it actually was working and at that point said it was unethical to withhold the treatment from the control group. This was the largest increase in survival since we started using radiation a LONG time ago. Much better than any of the other treatments the NCCN have given a higher rating than Optune.
I wrote a letter to the NCCN requesting they reconsider the rating for Optune, giving them this new data. They had a meeting to consider it and we are waiting for the results. IF they did not raise Optune to the highest rating, I think it is time for us to fight it as this group of lung cancer patient in the attached article did: a massive letter writing campaign to the NCCN, as well as to each of the doctors who make up the committee.
BTW: While this fight is going on, the company that makes Optune has been excellent about giving easy access to this treatment to patients. I do not know if that will continue if we lose this battle.
(Disclosure: Novocure is a sponsor of our organization)
We have talked a lot about this recently - I include this article because it points out that 2,000 patients have used it for gbms. That is a lot of experience. It also says that tumor treating fields are now being tried on ovarian and pancreatic cancer.
