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This is from our friends at PinPoint Patient Recruiting. They will pay you to take a survey, and will make a donation to the Musella Foundation. Let me know if you do the survey!
We frequently get asked if we can accept unopened Temodar and until now had to say no!
Our copay assistance program helps only if you have insurance. For those without insurance, we can't help but this place may be able to help!
There are a few trials of this drug, as well as the compassionate use program, but a new trial opened that requires DIPG patients to start before radiation. It is hard to get the word out to those patients since things happen so fast when first diagnosed and most families are in shock. So if you hear of a patient diagnosed with DIPG, mention this trial to them as an option.
Disclaimer: The Musella Foundation gave a venture philanthropy grant to the company that makes Onc-201 - which means the foundation gets a return if the drug is successful.
We are partnering with this company (and Cancer Commons) to track the patients in our Onc-201 compassionate use program. We are testing a program that will allow our patients to utilize xCures' services at no cost to the patients or to the Musella Foundation. xCures will evaluate a patient’s case, figure out the best treatment options using a combination of artificial intelligence, nurse navigators, research scientists, internal tumor board and an external virtual tumor board. xCures will then present the options to the patient who then decides with their own medical team which option to pursue. xCures will then help them get access to the treatments if needed, and then follow up to see how it works out, both to add knowledge to their knowledge base and to help again if there is a recurrence.
This is a a way to allow more of the drugs to get past the blood brain barrier. Should make the drugs work better!
Please help us raise money to allow this project (mentioned below) to continue. It is the most important project we ever funded and is making a huge difference in kids and young adult lives right now, and will hopefully speed up approval of the drug so that all those who need it can get it.
Disclaimer: This grant is venture philanthropy - which means if it is successful, the Musella Foundation will get a return.
From our good friends at Novocure! These Open Houses are valuable to anyone who has a brain tumor or knows someone with a brain tumor!
Finally some good news for a change! Although this is early data from a small noncontrolled trial, the survival times are impressive! They just about doubled the historical average survival for recurrent GBM without serious side effects!
This is great news. Dr DeAngelis is one of the best neuro-oncologists and has now been named the chief medical officer of Memorial Sloan Kettering Cancer Center. Hopefully she will be able to encourage a focus on brain cancer at MSK!
Unfortunately the trial did not meet it's endpoint of median overall survival. I did not really expect it to as the immunotherapies appear to help only a small subset of patients, but when they do - it helps a lot. This leads to a long tail of survivors, but the median does not change. All of the immunotherapies by themselves will probably have this same problem. I think the key is to combine them to the point where most people benefit. I wouldn't write this off until we see the complete results and see if there is a signficant tail.
This is from our good friends at the National Brain Tumor Society, the Cancer Support Community and Gilda's Club. It is an introduction to brain tumors. Everyone should read it.
These are exciting results. I am proud to say the Musella Foundation is one of the sponsors of that program!
It is impressive that there is so much research going on with Optune right now, and in many types of cancer besides brain.
As I understand it, the failure was that the median progression free survival did not improve by adding Opdivo to the standard chemoradiation. This is not surprising as most of the immunotherapies seem to work really well on a small subset of the population. We see this in a long tail of survivors. However, even when there is an impressive improvement in long term survival in less than 50% of the patients, the median survival would not be expected to change much. This data has to be looked at closely to try to identify patients who were helped, and then try it in that subset of patient, perhaps in combination with other immunotherapies.
Although this is a small study and very early, the results are impressive. This is an experimental chemotherapy that works in such a way that the MGMT repair system doesn't matter. Temodar works best when MGMT is methylated (inactivated), and not so well when MGMT is unmethylated, so a huge unmet need is a new treatment that can help unmethylated MGMT GBM patients. I will be keeping an eye on this.
From our friends at Novocure. These open houses are fun and informative! Worth attending for anyone who has or knows someone with a gbm. Most are live but there are webinar versions in there for people not near a live site!
This is a very scary article. Most young adult patients did not continue to work after a high grade glioma diagnosis. I feel that this should be one of the endpoints in all clinical trials: is the patient able to work at the level they did before the diagnosis? In the past, unfortunately, most patients did not return to work after the diagnosis. Many who did were not able to work full time or in the same capacity as before. 2 years after diagnosis it was unheard of for patients to be working at a high level job.
So now as we are seeing more long term survivors with Optune and some experimental treatments, we now need to know their quality of life. Being able to work is a very important quality of life marker. I have come into contact with a few patients recently who are able to work at high pressure jobs, just like before their diagnosis, over 5 years since diagnosis. This was very rare before, so it is a significant finding for any trials.
This is early - only in animals so far - but would be a major step forward int he fight against brain tumors. We have some effective treatments that have to be delivered by convection enhanced delivery, such as Toca 511 and PVSRIPO. These experimental treatments showed some remarkable results after just one (or 2) course of treatment. With this new technology, we could use these therapies on an ongoing basis and perhaps drastically increase their effectiveness!
