Here is an updated list of the Optune Open Houses.   These meetings are interesting and a lot of fun for everyone who has  a brain tumor.

 I am a fan of the CUSP 9 protocol.  Might be worth considering adding it to whatever else your plan is.

 This is a good opportunity to meet the experts and ask questions! 

We may extend this year's series a few weeks if there is interest as there are lots of topics to cover!

 We are trying to raise money for several very important projects.  I have many brain tumor research grant applications sitting on my desk right now - we will use the proceeds from our walks to fund these projects.  

 This is a very technical article but basically it boils down to showing that there is a dose-response curve.  The higher the dose the better the patient does.  The dose is determined by the arrangement of the arrays around the tumor, as well as the average compliance time - which is the % of time the machine is turned on!

The differences in survival are pretty significant.  The doctor has to determine the positioning of the arrays (and articles like this will help optimize that), but the patients can work on the second part: compliance.   I find that most patients do not understand the importance of high compliance. The doctors usually say to try for about 70% compliance, but the evidence says if you can get to 90% or better, there is a big improvement.  Unlike drugs which work for days or weeks after you take them, Optune stops working the second you turn the machine off - and starts again when you turn it on.  

 This article talks about leptomeningeal spread. (Which means the tumor spreads to the lining of the brain and spinal cord).  The common wisdom used to be that once this happened, the outlook was terrible and it wasn't worth even trying to treat it.  This article (and other experiences such as  from MD Anderson  (https://www.mdanderson.org/publications/cancerwise/new-hope-for-leptomeningeal-disease-care.h00-159144456.html) show that it IS worth trying to treat it, and the outlook is only about as bad as the usual recurrences that do not involve the meninges.   Many clinical trials and even compassionate use programs exclude patients with leptomeningeal spread.  They shouldn't.

 Interesting article.  They are correct that the D2R receptor family (also known as  DRD2) is very important in many types of cancers, including brain tumors – especially in tumors of the midline and brainstem.

However, they are incorrect when they say there is no useful way to target this. The drug Onc201 is a very selective antagonist to DRD2 and is now in clinical trials for brain tumors.    Although it is too early to tell how well it works, I have seen a few remarkable responses to it already. This article talks about trying to repurpose older drugs that are NOT selective.

Disclaimer:  The Musella Foundation was an early supporter of Onc201 and we are involved in funding the compassionate use program for this treatment.

 This will be very useful as we can now detect this mutation without doing a biopsy, so it can be used not only to direct the original treatment but to monitor how well the treatment is working.

 This is just one case report so of course you can not say how it well it works but it opens the door for another treatment possibility for those who have symptomatic radiation necrosis that did not respond to current treatment options.

 This study did not show a significant imporvement in outcomes when using Metformin.  Metformin is a drug used to control high blood glucose in diabetics but has been used off label to try to treat cancers including brain tumors.  More research needs to be done before we write this off.

 This is one of my all time favorite brain tumor doctors and proud to say she is a friend. Also an advisor to the Musella Foundation.  She just spent a lot of time helping us update our Guide for the Newly Diagnosed - which should come out next month!

Of course a single case report is not proof that a treatment works, but it is great to hear of individual miracles like this.  I know of a few more that are just as miraculous with this drug.   The journal it is published in is one of the most prestigious in the field -  which means by publishing it they recognize how  important an achievement this is.

As noted in the press release, our organization, the Musella Foundation (along with The Cure Starts Now Foundation, The Michael Mosier Defeat DIPG Foundation, Cancer Commons and xCures) has been a supporter of this treatment. We identified this as one of the highest priorities for us to support and we need help raising funds to help speed up this project (and others) so we can help other families have miracles too!

To recap: This experimental treatment, Onc-201, is for tumors that have the H3K27M mutation, which is also sometimes reported as a H3F3A mutation. It is mostly found in younger brain tumor patients, especially with tumors in the midline of the brain, brainstem, thalamus and DIPG.  There is a clinical trial going on now for this treatment but if you do not qualify for the treatment, there is a compassionate use program that might be able to help.  Contact us for details if you have this mutation!

This is a chance to learn about Optune - or for those of you using it - to meet others using it and swap tips and ask the experts any questions you have!  Most are live but the last one is a webinar.

  We are having a series of 5k fundraisers - visit the Walktoendbraintumors.org website to see Where and When.  If you can't participate in the event, you can still make a donation!

We already knew that there is a high frequency of this mutation in the pediatric thalamic tumors but this study shows that 60% of adult thalamic tumors have this mutation.    Glioblastoma in this area have the worst prognosis. This article shows why - all are MGMT unmethylated, and most have the H3K27M mutation.    The good news about all of this is that now we have options that we did not have before:

 For the H3K27M mutation, the experimental drug Onc-201 can be tried. There are trials available for it and if you do not fit the trial, we are involved in a compassionate use program for it - call us.  

 For the unmethylated MGMT, there is a different experimental drug - Val-083 which is in trial that is similar to Temodar but works in a different area of the DNA so it is unaffected by the MGMT status.

Val-083 is an experimental chemotherapy drug that is similar to Temodar but works in a slightly different way so that it is not affected by the MGMT repair enzyme, which means it should theoretically work on a Glioblastoma patient with unmethylated MGMT as well as Temodar works on a methylated MGMT glioblastoma.   This shows early results which show a hint that it does work this way.

 This is an interesting new type of vaccine.  These are early results but looks good.

That is $521 US Dollars a year at current exchange rates.   This is a fairly large trial of 100 GBM patients and it shows pretty good results - excellent if you take cost into consideration.  There are a few projects looking at repurposing older drugs or using special diets.  This is an excellent avenue of research but the only way we will home in on the best combinations is a registry that tracks ALL brain tumor patients so we can not only see the effects of combinations, but also see how the standard treatments are doing. The standard treatments have improved a lot recently.   We are launching a new version of our brain tumor virtual trial soon.  Watch for details!

 This is a new genet therapy trial for newly diagnosed gbm

 This opens another option for people about to have a brain tumor surgery.  This article describes how they give a cocktail of drugs  a few days before the surgery then when they do the surgery they can measure if the drugs got into the tumor and if they have shown efficacy.  If yes, they continue with that cocktail, if not, they switch to something else.    This prevents you from wasting time with an ineffective cocktail.  This team is also open to experimenting with different cocktails based on prior lab results. The article says that this team treats more glioblastomas than any other center in the country!