Sponsored by
It sounds exciting, and the best part is they will be trying it for many types of cancers, so they should be able to get funding for it. It is really hard to raise money to test things like this for brain cancer alone.
If you use Amazon, please follow the directions in this article... and you can generate donations to us without it costing you anything extra!
Let me know what you think of the changes and if you have any ideas for improvements!
I have mixed feelings on this one. On the one hand, I am all for patients being allowed to try experimental treatments, especially when all approved options have run out and they are not eligible for clinical trials. On the other hand, some protection of the patient is needed.
I would propose a few things before I allowed this to be made available:
1. Release all of the data on the clinical trials that have been run. They have not been published. Unofficial sources have said that there were over 100 trials of this treatment, and 99 of them showed negative results. 1 showed good results. Statistically, at the level of proof most commonly used, .05%, if you ran 100 trials, you would expect 5 of them to come out positive by chance alone. Having only 1 positive and 99 negative trials leads me to believe this is not the miracle drug it is touted to be.
2. I understand a traditional clinical trial can not be run on this group of patients, however, that does not mean that their experiances should go to waste. All patients who use a compassionate use treatment should be tracked. Our "Brain tumor virtual trial" is a perfect vehicle for this. An individual success is meaningless. About 10% of kids and a higher % of adults with brainstem gliomas do well for a long time on the standard treatments. If you take 3 patients, there is a good chance that 1 of them, and a small chance that 2 or 3 of them, would do well no matter what you did to them. However, if you had 50 patients tracked from before they start the treatment, the chances that 25 of them do well is pretty low if the treatment is not working. Not as convincing proof as a randomized blinded trial, but good enough for me and the people who have no other options.
Interesting new approach. Too early - only in mice now, but it looks like something to keep an eye on.
I love this. It would be a perfect tool to use with our brain tumor virtual trial!
This is a controversial area. Some centers find cytomegalovirus in all GBM cells, other centers can't find it at all. This is an attempt to standardize the procedure for looking for the virus. Hopefully, this will allow all labs to confirm that the virus is present in a very high number of gbm cells
Sounds like an interesting trial.
This is a fun fundraiser that anyone can participate in from their own home. The deadline is this Thursday - so do it now if you are interested!
They may have found a better treatment for ependymomas in kids. I usually say it is too early, since they didn't do the clinical trials yet, but when you have no other treatment, this may make sense. It is a drug approved for a different type of cancer so is easy to get.
We are one of the organizations mentioned!
We still do not know the best way to use Avastin. This articles seems to say that it doesn't matter when you start it - at the start, after first, second or third recurrence. It still gives about the same effect.
We have used up our funding and can no longer accept new applications.
It's nice to see these top researchers to get the recognition they deserve!
Great news! DC-Vax can now be sold in Germany. I do not know yet if Americans can go get it and bring it back. If anyone tries, please let me know how it goes.
The Toca 511 trial has been one of my favorites. It is a new type of gene therapy where a virus that only grows in tumor cells delivers a gene that can convert an oral nontoxic antifungal drug into a powerful chemotherapy, only in the cancer cells that were infected by the virus. There are now 3 separate clinical trials going on for the Tocagen treatment. The original 2 used local delivery of the virus to the area of the tumor. This one adds an IV injection of the virus and also local delivery. The idea is that it may be better able to hit those tumor cells that are spread out in the brain, far from where the MRI says the tumor is.
The Musella Foundation is one of the sponsors!
It is too early to tell if it would help people with gbms, but the best thing is that the drugs are already approved, so if the trial looks good, we can use these off label quickly!
This article looked at GBM patients who took Avastin for longer than 6 months and then discontinued it. 1/4 of the patients stopped for reasons other than tumor progression, and 3/4 stopped because of tumor progression. Then they analysed what happened, looking for a "theoretical" rebound effect. They didn't find it. Those who stopped because of other reasons did a lot better than those who stopped because of progression.
Great news! The DC-Vax trial passed it's safety review and can continue without changes. Of course, that is what we expected but it is great to hear! Good luck to the trial!
