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09/21/16 The Clinical Implications of Inconsistently Methylated Results from Glioblastoma MGMT Testing by Replicate Methylation-Specific PCR.        

 Excellent article. Apparently, when the MGMT methylation status test results show inconsistant methylation, it really should be thought of as being unmethylated.  For background:  MGMT is a gene that codes for an enzyme that repairs damage to the DNA caused by Temodar.  If your MGMT genes are methylated, that means they are inactive and can not produce the repair enzyme.  This makes Temodar work much better.  However, if your MGMT is unmethylated  (or apparently now - even inconclusive), the repair enzyme is produced which reverses the damage caused by Temodar, making it not really work.

This really didn't matter much until recently when a new drug, Val-083, was created which works similiar to Temodar but on a different part of the DNA so that this repair enzyme can not reverse the damage. This drug is about to start phase 3 clinical trials. Worth considering for those whose test show unmethylated MGMT. 

09/19/16 CNS Oncology Publishes Tumor Treating Fields Treatment Planning and Patient Follow-up Guidelines in Glioblastoma        

This should make the treatment work better - especially for those offices that do not have a lot of experience with using Optune

09/19/16 Brain cancer replaces leukemia as deadliest cancer for kids, study shows        

 Luckily, this is a result of better treatments for Leukemia, not a rise in the number of pediatric brain tumors.  This underlines the need for more research. We need YOUR help to enable us to fund more research. The ideas are there - just not the money.

09/13/16 The CERN Foundation recently completed the second edition of their Ependymoma Guide        

 From our friends at the CERN Foundation. They did an excellent job on this guide about Ependymomas.

09/08/16 Monteris Medical Receives IDE Approval From FDA To Evaluate NeuroBlate┬« In Patients Newly Diagnosed With Glioblastoma Multiforme        

 This trial will be for patients with newly diagnosed GBM who are told the tumor is inoperable. This is a form of laser surgery where a small hole is made in the skull and a special probe is inserted to destroy the tumor. It can sometimes be done in locations that were though impossible to treat using regular surgery.

The Neuroblate system is already available all over the USA.  You can find a doctor near you at   

[Disclosure: Monteris is a sponsor of the Musella Foundation]

09/08/16 Human cytomegalovirus encoded chemokine receptor US28 activates the HIF-1?/PKM2 axis in glioblastoma cells.        

 The concept of cytomegalovirus being associated with GBMs is controversial.  Some researchers say 100% of GBM samples have it, others say none of them have it. I tend to agree with the ones that say it is very common in GBM samples.  IF that is true, this study may show how CMV can promote the formation of tumors. And that opens the door for treatments. There is already an approved drug that fights CMV, and there is a brain tumor vaccine under development that targets the CMV. Preliminary results look good. This study also identifies other downstream targets which may be exploited.

09/07/16 NY Islanders fundraiser for Brain Tumor Research!        

 It's getting close!  One month away to the start of an exciting season!  Get your tickets now and help us fund some really important brain tumor research!

09/07/16 DelMar Pharmaceuticals and Accurexa to Collaborate in the Development of a Novel Combination Chemotherapy for the Local Treatment of Brain Cancer        

 Val-083 is an experimental treatment (actually it is approved in China for other types of cancer) for brain tumors. It is similar  to Temodar, but works at a different site which is not affected by the MGMT status of the patient.  The VAL-083  trial for recurrent GBM should be considered for patients who have unmethylated MGMT. 

This press release talks about combining VAL-083 with Temodar or BCNU, and implanting it at the time of surgery to increase the dosage of the drugs at the site of the tumor. Sounds exciting.

09/07/16 The fourth weapon in the battle against cancer        

 Nice story about one of the members of our online support group (Brain-novocure)! To join the group, go to and select brain-Novocure

09/01/16 Gliadel wafer implantation combined with standard radiotherapy and concurrent followed by adjuvant temozolomide for treatment of newly diagnosed high-grade glioma: a systematic literature review.        

According to this study, adding Gliadel at the time of the initial surgery, followed by the (old) standard of care adds about 3-4 months to overall survival.  That is pretty good, considering it is a 1 time treatment done at the time of surgery. I feel it should be used more often than it is.  Some hospitals seem to use it a lot, and others not at all.

09/01/16 Biological effect of an alternating electric field on cell proliferation and synergistic antimitotic effect in combination with ionizing radiation.        

 This brings up an exciting possibility. Optune is not used during radiation now, for theoretical reasons - the radiation can irritate the skin and cause delayed healing, which may make the irritation from the electrodes worse. As far as I know it was never tried. Might be worth trying.

09/01/16 Tumor treating fields inhibit glioblastoma cell migration, invasion and angiogenesis.        

 Another abstract on Optune showing a good effect in the test tube.

08/31/16 Musella Foundation Copay Assistance Program reopens!        

 This program will probably close quickly so if you think you may need it, apply as soon as possible!

08/31/16 Immunotherapy, Vaccines Offer Promise in Glioblastoma, But Data is Still Preliminary        

 This is exciting but going too slow!  I am trying to speed up the process! I am saving up to fund a brain tumor research project that combines a checkpoint inhibitor with a vaccine in a human trial!

08/31/16 Kadmon launches mid-stage study of lead oncology candidate in brain cancer        

 This oral treatment crosses the blood brain barrier. 

08/25/16 NY Islanders fundraiser for Brain Tumor Research!        

 This is your chance to meet and hang out with me and other families dealing with brain tumors while enjoying the first game of the season at Barclays! Always a fun event!

08/24/16 Update published for "Treatment Options For Glioblastoma and other Glioma"        

 This is the most important article on our website and is updated once a year..  Ben Williams originally wrote the book: Surviving Terminal Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About" in 2002. Since treatment change so rapidly, it needed an update every year, and Ben graciously allowed us to host the yearly updates to distribute for free. This year, for the first time, our medical editor, Stephen Western, helped Ben update it.  New this year is an easy way to see changes from previous editions - they are now in red.  They did a great job and this is a must read for anyone who is interested in Brain Tumors.

08/23/16 Curcumin Changes the Polarity of Tumor-Associated Microglia and Eliminates Glioblastoma.        

 This is only in mice now but looks exciting.

08/18/16 Tamoxifen Induces Cytotoxic Autophagy in Glioblastoma.        

 I had a relative do great for over 5 years with high dose tamoxifen for her gbm.  It was relatively popular before Temodar came into use. Studies showed that it helped a small % of patients, but when it helped, it helped a lot. And it had minimal side effects.  This article  might explain why it helps some patients and not others. More research needs to be done.

08/18/16 Evaluation of pseudoprogression rates and tumor progression patterns in a phase III trial of bevacizumab plus radiotherapy/temozolomide for newly diagnosed glioblastoma.        

 There has always been the fear that using Avastin would cause the tumor to become more invasive as the blood supply to the tumor gets cut off.  This article shows in a large number of patients that this fear is not justified.

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