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This is the counter point to the 60 Minutes story on the polio vaccine for glioblastomas. She has a few good points. It is way too early to say this is a miracle cure. However, I think it has the potential to be a big step forward. Contrary to what this reporter says, I do think that IF it works for GBMs, it is very likely that it will work for most other types of cancer. There wasn't enough time to talk about it on the show but I was at Duke a few weeks ago where it was discussed at length and they discussed how they tested the other types of cancer in the test tube and animal models, and it is the same mechanism of action. In the GBM trial, there were some deaths relating to increased swelling in the brain as the immune system kicked into high gear. That causes a problem because in the head, the skull has a limited volume and can not expand, so swelling causes a rise in the intracranial pressure which causes all sorts of problems. We do not have that problem in the rest of the body- swelling can be accommodated easily. So it may work better outside the brain. We are lucky they are working on the brain first.
A big thank you to the students (and teachers) of the Middlebrook School in Wilton, CT. Great job!
Another thing to worry about... the link shows the difference between the real medication and the fake one.. the real one has a blue top (the fake has a white top), and the NDC number ends in -31 for the real one and -41 for the fake.
This may be one of the most important news articles of the year. This will give the trial the green light to start all over the country - and if successful, may quickly lead to FDA approval. There will be a story about this treatment on "60 Minutes" on Sunday.
Disclaimer - I am on the patient advisory board of The Brain Tumor Center at Duke, but have no financial interest in it.
This is the new classification for brain tumors. They now recognize that GBMs with and without the IDH mutations are very different tumors - they were lumped together before, but they behave so differently that you can't compare them. All trials from now on should seperate out the data by IDH status.
For more details see iap-ad.org/lectures/ESPC/Day2/08.30%20-%2009.15%20-%20WHO-Dubai%202015.pdf
This is a great program for kids and teens to interact with other kids going through the same thing in their families.
Very good results. An article at http://neuro-oncology.oxfordjournals.org/content/9/1/29.abstract says average 12 month survival for recurrent gbm is 14%. This trial is reporting 61%.
This project was supported, in part, by the Musella Foundation (as well as the other organizations listed in the article!). Thanks to those whose donations allowed us to help get this project going!
Unfortunately, this treatment did worse than the control group - which was the standard of care.
Neuroblate is now available in a lot of centers across the USA. Go to mybrainsurgeryoptions.com/ for details on the procedure and where it is available!
(Monteris - the maker of Neuroblate - is one of the sponsors of our organization)
This is an experimental treatment of a new targeted drug which hits 3 targets: NTRK, ROS-1 and ALK. Might be worth trying this trial (or trying to get it on compassionate use if you do not fit the trial) if your genomic report mentions you have 2 or 3 of these targets overexpressed.
Go to https://clinicaltrials.gov/ct2/results?term=Entrectinib+&Search=Search for the current trials with this drug.
Nice story - and I am honored that she chose the Musella Foundation as the beneficiary of the book sales! Thanks!
They did a nice jobe with the website. Take a look at the stories there. I never heard of ThunderClap before but it also looks like it can be very useful to raise funds for research and awareness for brain tumors. This is a perfect way to try it out. Follow the instructions below. You will have to give your permission for the Thunderclap program to post a one time message to your facebook page. It is safe to allow that. They can't see your username or password. You do that now and then at the specified time, Thunderclap posts a message supporting brain tumors to everyones' facebook (and other social media) pages. By everyone sending it at same time, a huge number of people will see it and it might trend on twitter.
This sounds like an ideal treatment for small recurrent gbms. They had local control (of the treated tumor) in over 90% of the tumors, although most people eventually died of tumors growing outside of the treated areas. None had radiation necrosis which happens frequently with single fraction sterotactic radiosurgery.
This may work well in combinations with other treatments to give them time to work.
We are honored to be one of the beneficiaries of this event.
I am on the advisory board of the brain tumor biotech center at Northwell Health Foundation. This fundraiser is going to a great cause!
[This is a correction - the link was incorrect] The Moonshot program is looking for ideas.. I submitted one on the Virtual Trial concept. Would be nice if everyone helped by commenting on it - which will bring it to their attention!
Go to https://cancerresearchideas.cancer.gov/a/dtd/Virtual-Trial/177937-39827
I have never been as optimistic as now that major advances are near! We have the power to speed it up!
This patient's insurance company initially rejected the claim for Optune because of the patient's age. The FDA approval was for ages 22 and up. That is a strange age for them to pick. I assume it was because the youngest patient in the trial must have been 22 even though the trial accepted patients 18 and older. Anyway - I am happy the insurance company backed down and approved it. If anyone else has this problem, contact me and I can try to help fight it.
The Moonshot program is looking for ideas.. I submitted one on the Virtual Trial concept. Would be nice if everyone helped by commenting on it - which will bring it to their attention!
Go to https://cancerresearchideas.cancer.gov/a/dtd/Virtual-Trial/177937-39827
