This is a pdf version of a PowerPoint presentation given about advanced MRI imaging.  It shows a new technique called  Fractional Tumor Burden Mapping (FTB Maps) that can show progression or response to treatment faster and clearer than the usual scans. It can also distinguish better between pseudo-progression and true progression.    This can be done by any MRI machine, but they need to obtain the software to create the maps from the Imaging Biometrics. (The contact info is in the presentation).  You can ask your doctor to order FTB Maps as part of every scan you get.

 This is a heartbreaking situation.  My worst fear (which has driven me to create the Musella Foundation) was that there was a treatment in existence that could help a lot, but we were not able to get access to it.    Optune has been proven to help. A lot. There is no longer any question that it works and has the best results of any FDA approved treatments in the USA. The problem is the expense.  And how much value you place on human life.  Here in the USA, the vast majority of insurance companies pay for it. We - The Musella Foundation - have a copayment assistance program that has been helping a lot of patients pay the copays and deductibles to the point where most of the people that we help do not have to pay anything for Optune (as well as Temozolomide, Gleostine or Avastin). Some people who make too much money to qualify for our program - or the Novocure assistance program - will have to pay something, as will people without insurance.  

In the UK, they have a strict monetary limit on what a person's life is worth.  They do it because they have a limited amount of money and need to use it where the most people would benefit. Sounds great in theory until you happen to have a serious disease and need a treatment that exceeds their limit.  The most unfair part is that the the current regulatory system is set up so that any new treatment for a rare disease will exceed the limit.  I am trying to change that with the Promising Pathway Act, but unless that or a similar bill passes, patients in the UK is not going to be able to use any new treatment.   DCVAX will hopefully get approval within the next year and is probably going to have the same problem. The CAR-t Cell therapies and viral therapies in the pipeline are going to way more expensive.  The only hope is to change the underlying costs so these treatments can be developed at a fraction of the current costs and to have more options so they can compete on cost.

 This article questions the need or benefit of adding Temozolomide to radiation for IDH wildtype Glioblastomas.   The conclusion is more research needs to be done, but there was clearly no benefit to adding Temozolomide. This goes completely against everything we thought we knew.  More research needs to be done but it opens the door to trying different approaches.

 This fundrasier already raised over $5,500 for brain tumor research!  Follow the link in the press release to learn more about it!

They say they have a urine test for brain tumors that is 100% sensitive and 97% specific. That means they can 100% of the time tell when you have a brain tumor, and 97% of the time tell when you do not have a brain tumor - so about 3% false positives - which is very good for such a test.   This can be used as a screening test during your annual physical exam.  Unfortunately we really do not yet know if early detection will make much of a difference with Glioblastomas.

 This may be the most important paper of the year so far!    This is the preliminary results of the clinical trial of Optune combined with Pembrolizumab (Keytruda) along with Temozolomide for adults with newly diagnosed Glioblastoma.   The results are impressive. They compared these patients to matched patients from the ED-14 trial - which was the large phase 3 trial of Optune plus Temozolomide for newly diagnosed patients.   By adding Keytruda to Optune plus Temozolomide, the median overall survival was 25.2 months, compared to 15.9 months without the Keytruda. This is from the time Optune was started - which was about 3 months from diagnosis - so add 3 months to those numbers to compare to other treatments!   That is very impressive and worth trying.   All of the components are approved, but Keytruda is not approved for brain tumors so you might have insurance issues.   If you have problems, talk to us and we can sometimes help.  Our copay assistance program can help pay for Optune and Temozolomide for you but not the Keytruda yet.

This article shows that for elderly or frail glioblastoma patients, there is a way to cut the treatment time in half, from 30 treatment days (5 days a week for 6 weeks) to 15 treatment days, and up the dosage per treatment and get about the same results.  This makes it much more convient for the patient and probably saves a lot of money.     Currently for this group of patients, they do use the 15 treatments but at a lower dose with worse results. This shows the higher dose is safe and works better!

 They are vague on which drug this is, but it sounds exciting.  Dr Debinski is one of my favorite brain tumor researchers.  He was involved in the development of the drug cintredekin besudotox.  That "Smart Bomb" targeted drug was supposed to seek out and kill cells that had IL13 expressed on their surface.   Unfortunately, it is a large molecule and could not be given oral or IV, so they tried convection enhanced delivery.  At that time, CED was not advanced enough and most patients did not get the drug to the entire tumor bed.   The target was also found on some normal cells, so it had some toxicity.

   Dr Debinski has been refining the concept over the years.  I do not know the details of the current drug, but my guess would be he picked 4 targets that are only (or mostly) found on tumor cells, attached to a toxin,  so it should work on all Glioblastomas, and use modern CED technology that will let the drug get to the right place in all (or most) cases.  I wish him luck.  If you have a dog with a Glioblastoma, this might be worth a try. They are working on dogs for the next 2 years then will start human trials.

 This is a fun event. No purchase or donation needed (but appreciated).   Follow the link to the event, register with your email address and make up a password. After you log in, you will be asked for the group password, which is sammyhusky    

Then just pick which teams you think will win each match!   First prize is $1,000!

You need to do this by tommorrow 3/16/22.  Do it right now!

 This vaccine trial is one of my favorites. They had pretty good early results!

 This fascinating article talks about a few important things:  They used a deep brain stimulator to try to mimic tumor treating fields.   These are used to treat diseases like Parkinson's disease with implanted electrodes and batteries.   It may be a more convenient way to  administer tumor treating fields if they can solve a few problem such as getting the correct distribution of fields and battery life to treat a large area - as this study was only in the test tube on a small area. Of course it is way more invasive - has surgical risks as well as the risk of having a device inside your brain.  No sure if it is worth the risks compared to Optune - where the problem is having to shave your head,  have electrodes stick to the scalp and carrying around the device and battery.

  This paper also shows that either method also works better with drugs.  They show a big improvement combining the tumor treating fields with Temodar even on unmethylated MGMT patients.  They also mention a big beneift combining with Mebendazole, which is a drug used to treat worm infestations and some brain tumor patients claim it helps the tumor.

They show gene array profiles which opens the door to more targeted treatments being used in combination.

And finally they show that some tumor cells are more sensitive to frequencies other than the stock 200 kHz - opening the door for future versions where the frequency can be tuned to your specific profile of tumor cell size.  Or perhaps a system that varies the frequency over all of the cells sizes found in the tumor so the tumor couldn't escape the treatment by evolving a larger or smaller cell size.

Overall - very interesting and opens up a huge need for further research! Good work!

This is exciting.   The checkpoint inhibitors were miraculous for other types of cancer but did not seem to help brain tumors because brain tumors are immunologically "cold".  This paper says that Optune can help turn the tumor into a "hot" tumor, which makes it more amenable to treatment with checkpoint inhibitors.   Early research seems to show it works. More research is needed to figure out the optimal timing and dosages but this is the type of thing we can do from within our patient navigation program and registry!  So if you are thinking of trying the combination, join our program first so we can track it! https://virtualtrials.org/xcelsior.cfm

[Disclaimer: Novocure is a sponsor of the Musella Foundation]

 Duh!  They obviously did not trust the results of the EF-14 Optune trial, which had about 700 patients so they repeated it in a small group of 9 (of the worst prognostic group)  patients and had the same finding.  What a waste of a trial. They should have tried some new combinations to find ways to make it work better, not repeat what was already done better.   This was probably an excuse to delay paying for it.  UK patients and charities should be demanding that their health system to pay for Optune.  

[Disclaimer: Novocure is a sponsor of the Musella Foundation]

 Synthetic control groups are the key to progress.  They should work better than the 100 year old current system, and would allow the elimination of placebos!  A win / win. I wish them luck.

We (Our partnership with Cancer Commons, the Musella Foundation and xCures) are also working on synthetic control groups!  

[Disclaimer: Plus Therapeutics is a sponsor of the Musella Foundation]

 Interesting article about our patient navigation program and our collaboration with xCures and Cancer Commons. A small clarification - the Musella Foundation not only identified the compassionate use program mentioned in the article, but we created, paid for it and ran it with our partners!

 They had one patient (out of 19) who is alive and tumor free 8 years after the single treatment.  Four other patients had a partial response.  These are pretty good results for a phase 1 trial.

 This report is very sad. In the Philippines, the average survival of Glioblastoma is only 7.6 months.   Only 15% of the patients even got chemoradiation. Nobody gets Optune. The major factor seems to be 83% of the patients were in the low income group.   Most of the world is probably in the same position.  We are lucky here in the USA that most patients have access to the approved treatments that they need.   Of USA patients who can get access to Optune, the average survival is over 2 years. 

We need more and much better treatments, but we also need to keep in mind the costs.  Brain tumor treatments are very expensive and most of the world just can not afford it.  I know that is a bigger problem than we can even hope to tackle, but what we can do is change our system to make the treatments much cheaper.  Our Promising Pathway Act should drastically cut the cost of new treatments as it cuts the time and expense of getting FDA approval while increasing the amount of research done on the treatments!

 I have seen this happen so often. A patient comes to the USA for treatment, only to be hit with huge bills and either can't get the treatment or it doesn't work.  Rarely, it does work out great and I have seen a few  miracles, but most of the time it doesn't work. The article says that the answer is more funding for research.  I completely disagree. I think the answer is to change the system so that once a treatment looks promising enough that people around the world are clamoring for it and willing to pay hundreds of thousands of dollars, the treatment should become approved and be able to be sold to patients.  Of course all of the patient have to be followed as if they are in a clinical trial so we learn how best to use (or not use) the treatment.