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This is a huge problem for our brain tumor patients. I get phone calls every day from patients who can't afford their treatments. We were able to help a lot of them with our assistance program but that program is now closed as we ran out of funding. But the calls still come. Heart breaking. That was just a band-aid on the major problem: the insane system we use to get new drugs developed. My dream is to develop a cure as a nonprofit and be able to get it to all of the people who need it at a reasonable cost.
This may be why the vaccines do not work in some patients. Worth further study.
I sent a story about this in a recent news blast but this is the press release from Novocure and their take on the topic!
I love this type of research. They took into account the patient's quality of life as well as survival time to determine that for 1 to 3 brain metastases, stereotactic radiosurgery is better used alone rather than in combination with whole brain radiation. The survival times were about the same either way, but quality of life was better with radiosurgery alone. Not to mention a lot cheaper and more convenient.
These 3 projects can make a big impact in this disease, quickly.
The first project is a pilot human trial for kids with brain tumors using the polio virus vaccine made famous on a recent 60 minutes episode. This is the first time it will be tried on children and if successful, will lead quickly to a larger trial, then hopefully FDA approval so all kids would be able to get access to this promising treatment.
The second project involves a new way to get drugs to the tumor at a higher concentration and for a longer period of time. This is a mouse experiment to see if this new delivery method can make a significant difference in outcome. If it does, it will lead quickly to a human trial.
The third project combines an immunotherapy that is already approved for other types of cancers with stereotactic radiosurgery in a mouse model. Since both parts are easily available today, this can lead to immediate use in patients if successful.
I would like to thank all of the volunteers and donors who made it possible for us to give these grants out!
I am sorry to say, the program is now closed to new applicants. I am trying to raise more money - and will reopen it as soon as we can.
The National Comprehensive Cancer Network is one of the more influential organizations that publishes guidelines for treating cancers. They just released a new version of the guidelines for CNS cancers and added "Alternating Electric Field Therapy" (which is the Optune system) to their standard of care for newly diagnosed Glioblastoma and Anaplastic Astrocytoma.
When I last met with Medicare over the issue of coverage for Optune, they mentioned the lack of support from the NCCN as one of the reasons they did not want to cover Optune. Hopefully this removes that issue.
If you think you qualify and may need help paying for one of the covered treatments (Optune, Gliadel, Temodar or Avastin), send in the application as soon as possible. We have enough funding for only a few more patients.
Although it was only a small phase 1 trial, they reported that the overall survival doubled compared to historical controls. This is now in a large phase 2/3 trial throughout the USA. We are working on raising funds to help speed up the approval process so all brain tumor patients could get access. Eventually, this may work for not only brain but most other types of cancer.
Very good early results reported. The interesting things about this treatment are:
1. that it might work on patients whose tumors are MGMT unmethylated - a condition which usually makes them resistant to Temodar.
2. It may work after Avastin fails. Up until now, there hasn't been much success on patients after Avastin failure.
This combination of vaccine and checkpoint inhibitor worked much better than either alone, at least in mice. Hopefully they can move this to patients quickly, as the checkpoint inhibitor is already FDA approved for other diseases and they are already running a trial of the vaccine.
By the way - they acknowledge the Musella Foundation For Brain Tumor Research & Information, Inc as a source of funding! This is your donations at work!
A brilliant idea.. funded in part by the Musella Foundation!
I have seen the new system, and it is much nicer. Smaller, lighter, looks much more modern, and is easier to use.
Most of the funds for this round of granting come from our National Walk To End Brain Tumors. I would like to thank all of the volunteers who made it possible!
Great proof of principle that TTFs can interfere with tumor growth and spreading. Maybe they could use this type of device to personalize the Optune treatment based on a biopsy from each patient and make it work better.
This is a new platform for delivering treatments into the brain tumor directly. Higher dosages can be achieved in the tumor, with less or no exposure to the rest of the body. Work in mice showed that Temozolomide and BCNU given directly into the tumor work a lot better than the standard ways of giving it. Hopefully this will translate into patients quickly.
This is still preliminary work, but raises an important point: that we should recheck everything that we thought we knew about these tumors. The technology we have now is amazing compared to what was available in the 1950s when it was decided that brain tumors use glucose as the main energy source. This article points out that by culturing the tumor cells in blood, you change the tumor cells to use what is most common in the blood, which is different than what is in the brain. On the other hand, they also mention that PET scans show where glucose is being used - and the tumors do use a lot more glucose than non tumor brain.
The NY times got it correct. A lot of other news outlets were reporting that cell phones cause cancer, based on prelimineray results of a study that found 2% of male rats and 0% of female rats exposed to a lot of cell phone radiation developed brain tumors. None of the rats in the control group developed tumors, but in the past, historically with this line of rats, 2% would be expected to develop brain tumors. That none did in the control group is a simple statistical fluke - it can easily happen that a few less or more than expected develop tumors. And that is what happened in the treatment group - the expected 2% of males developed it but the females didn't.
The Times pointed out that the incidence of brain tumors in the USA has not gone up over the last 20 years, during a time when cell phone use has grown exponentially.
My thoughts - there is no reason to give up your cell phones.
This study shows that it might be OK to avoid radiation therapy for high grade gliomas in young children, or at least delay it until they are older. Radiation in young children can cause permanent problems like a lower IQ. These results are still not good enough but are similar to the treatments that do include radiation, so the lucky few who survive are presumably in better condition. A better way needs to be found.
