If you think you may need assistance paying for these covered treatments, apply. Do not feel awkward asking for help. One of our main objectives is to help reduce the stress in your life! The other one is to speed up the search for the cure!

 Canada finally approved Gleolan.  The USA FDA approved it here in the USA about 3 years ago.  Gleolan is a dye used at the time of surgery to allow the surgeon to see any remaining tumor cells. It has been shown to increase the chances of a complete resection, which increases the progression free survival time.    

This doesn't mean that Opdivo (Nivolumab) doesn't help Glioblastomas. They just tried to use it incorrectly.  Opdivo is a checkpoint inhibitor. It takes the brakes off of the immune response to help your body fight the tumor.  But there has to be an immune response present for it to work.   Unfortunately Glioblastomas are not a "hot" tumor and by itself doesn't really generate enough of an immune response that Opdivo can enhance.  Something needs to be done to the tumor to initiate that immune response, then use Opdivo to enhance it.  One possibility is starting Opdivo before the surgery when there are a larger number of tumor cells present and the act of the surgery itself triggers an immune response which Opdivo can enhance.  Or during radiation when cell death causes an immune response.  In this trial they waited until the radiation was over and the immune response slowed before starting Opdivo.  

Another possibility is to use Optune at the same time as Opdivo. Optune triggers an immune response as it kills the tumor cells. Vaccines may do the same.  This is why we need the Promising Pathway Act that I proposed.   We need to be able to try different combinations and see results quickly.

 A nice story about GammaTiles.  GammaTiles are an FDA approved therapy for newly diagnosed and recurrent malignant brain tumors. They are implanted at the time of surgery and release radiation to the tumor bed.

 This is an exciting trial for people with leptomeningeal tumors,   Most clinical trials exclude patients with leptomeningeal spread because it is hard to treat and usually has a worse outcome than those who do not have leptomeningeal spread.  This trial only accepts these most difficult cases - hopefully to quickly show how good the treatment works. For details and to join go to https://clinicaltrials.gov/ct2/show/NCT04661384  and the contact information is at the bottom of that page. 

Disclaimer: Mustang Bio is now a sponsor of the Musella Foundation!

 Dr Roger Stupp talks about viral therapies for glioblastoma, in particular the results of a study of DNX-2401 plus Pembrolizumab.  This small study showed patient benefit in about half of the patients and 12% had objective responses. A few patients did well for a long period of time.  Dr Stupp gives us his thoughts on what these benefits mean to patients. I agree with him completely that although it is not a home run, we need small steps to build upon.  And we need a lot more research to make sure we do not throw out good therapies as we have with Tocagen and ICT-107.   I keep saying this but my Promising Pathway Act would fit nicely into this concept.  Treatments like this would be approved now, your doctor would be able to prescribe them for you and we would have much more data to judge the treatments with and to optimize the combinations used.   We should never throw away a treatment that resulted in some responses until we are sure it doesn't work - or until we have something better.

This is a small study so of course it has to be validated in a larger study, but the initial results are very impressive. The concept is elegant. Instead of randomly picking a drug from the many possibilities at the time of recurrence, they test your tumor cells in culture with a large range of possibilities and select the one that is most likely to help you.  This has been tried year ago but the technology now is way more advanced.

This is only available in clinical trials now. See https://clinicaltrials.gov/ct2/show/NCT03561207 for details and to join it! They now accept patients with newly diagnosed or recurrent malignant brain tumors who are about to have a surgery, as fresh tumor is required to run the test. This is something to really consider if you are going to have a surgery.

 We have partnered with Cancer Commons to offer this service to our patients at no charge to you.  Go to https://virtualtrials.org/xcelsior.cfm to get started! This is a patient navigation service where we help find the best treatment options for you.  You decide which one to try, and then we follow up and see how it turns out so we learn from every patient!  Right now it can be used with malignant brain tumors, as well as pancreatic or ovarian cancer, with other cancer types coming soon!

 Optune is now available to patient in Switzerland!     Better late than never. It was approved here in the USA about 9 years ago.

 This trial is worth considering for patients with newly diagnosed Glioblastoma - if they happen to live in the NY City area.    Enrollment must begin before radiation starts. 

 Interesting trial about to open for DIPG.  This drug, OKN-007 recently reported good results for recurrent Glioblastoma, with an average survival of about 20 months compared to historical average of about 8 months. The Musella Foundation gave one of the first grants to get this started, back in 2013! I wish them luck and I will let you know when the trial opens.

 Look at episode 2 which focuses on Dr Alfredo Quinones-Hinojosa, a neurosurgeon at the Mayo Clinic in Florida. Interesting story of how he became a neurosurgeon and it shows an awake surgery for a brain tumor!

 They will be testing their drug, paxalisib, in combination with Onc-201 in patients with DIPG. Sounds very interesting!

 This trial for recurrent malignant glioma is now available in 3 major centers in Texas.  It is a new way to target radiation to the tumor. Early trial results reported promising extension of survival for recurrent glioblastoma.

 Of course using the word cure is way too early but this sounds like an interesting treatment.

 Although this article is about lung cancer patients, it applies even more to brain tumor patients.  The cancer takes so much from us already.  This article says over 70% of female lung cancer patients have sexual dysfunction.  I would bet the number for brain tumor patients is higher since we also deal with so many other issues.    The good news is much of it can be treated. The big impediment is awareness. Sex is not something we like to talk about and takes a back seat to issues involving the tumor.  However, it has a huge impact on quality of life.  If you are having problems, talk to your doctor or nurse about it. 

 I mentioned this before but it is very important so sending it again.  If your pathology report says you have any of these mutations, you are eligible for the program. They are: MAPK, KRAS, NRAS, HRAS, BRAF, MEK, and/or ERK

 This is in mice, but probably would work the same way in people.    Might be a perfect use for Avastin - which also reduces brain swelling. Perhaps it could eliminate or at least reduce the amount of Dexamethasone used while undergoing immunotherapy. Also points to the need for other treatments for brain swelling like Xerecept, which did well in clinical trials but then just disappeared. At that time, the reduction in Dexamethasone dosage was not seen as important enough to continue development of the drug. Now it is.

 I posted this a few weeks ago but at that time they had some paperwork delays and couldn't enroll patients. Now they can! This is for anyone with a grade 3 or grade 4 malignant tumor that needs a surgery. If you need a surgery anyway, it is worth considering adding a treatment that could help stop the tumor from coming back quickly.  There is only 1 participating center right now, Moffitt Cancer Center in Tampa Florida, but one of my favorite neurosurgeons, Michael Vogelbaum, MD, PhD will be doing the surgery.

SNO is the Society Of Neuro-Oncology's Annual Scientific meeting.  Follow the link below to see my thoughts on the highlights and to discuss them!