Note: The comments under each article title are the opinion of our president, Al Musella, DPM, and do not reflect official policy of the Musella Foundation!
01/26/19 Effect of health disparities on overall survival of patients with glioblastoma.
This article shows what we already knew: If you do not have insurance and you are diagnosed with a GBM, you are going to have trouble getting treatments and you will not have any chance to beat it. 80% of the uninsured patients did not even get the standard of care treatment. This is not acceptable. The system has to be changed.
01/23/19 Regorafenib Doubles 12-Month Survival Compared with Lomustine in Recurrent GBM
This drug looks good in a small study (you can not always rely on small studies) - doubling survival percentage at 12 months. The drug is approved for other types of cancers so it is available off label. Insurance companies might complain. I do not know the cost but my guess is that it is expensive. If anyone is going to try it, please join the virtual trial (virtualtrials.com) first so we can quickly find out how it is working. We might also be able to help you fight your insurance company if they deny it.
This article also points out that you can have a huge benefit without moving the median progression free survival. This issue has come up in a few other clinical trials recently. The median survival or progression free survival is not increased so they think the drug failed. However, the median doesn't take into account the long survival tails of these trials. The recent article about PVSRIPO demonstrated this. A huge benefit at 2,3 and 4 years, but the median doesn't change much.
01/22/19 Dexamethasone—Friend or Foe for Patients With Glioblastoma?
This is a very important article. It says that using Dexamethasone hurts the immune system. Sometimes we need it - it is used to treat swelling of the brain which can cause death, but we should be careful and consider other treatments if possible, Temozolomide has a similar effect. This means it might be best to start immunotherapies before starting Temozolomide, and before the surgery that necessitates the use of Dexamethasone. And also keep the dosage of Dexamethasone to a minimum if possible NOTE: Dexamethasone is the one drug that you can NOT just stop cold turkey - that can kill you. There is a weaning schedule that has to be followed closely so you can not adjust the dose yourself. You need to talk to your doctors about this.
01/14/19 Copay assistance program is now open!
Thanks to generous donations, we are able to reopen our copay assistance program! We have a lookback period of 3 months from when the completed application arrives so if you are approved, and have paid for a covered treatment in the last 3 months we can reimburse you!
01/11/19 Publication Reports Role of Dopamine Receptors in Cancer and ONC201 Response
The article they mention is at http://clincancerres.aacrjournals.org/content/early/2018/12/19/1078-0432.CCR-18-2572.long
but it is not free. It shows that the DRD2 is overexpressed in many types of cancer. Onc-201 blocks that receptor, but they also found that high levels of DRD5 make the cells resistant to the Onc-201. So for this drug to work, we need high DRD2 and low DRD5. That happens in most brainstem gliomas, and high grade gliomas that are in the midline of the brain - especially those in the thalamus, and in younger patients. There are about 14 clinical trials going on for Onc201 in various cancers, including brain. For those who do not qualify for the clinical trials, there is a compassionate use program available – contact us (the Musella Foundation) for details 888-295-4740
01/09/19 Musella Foundation awards 2 grants!
The first grant is for the development of a new type of vaccine for the treatment of brain tumors. The second is a project to try to make it easier to find the correct clinical trials. It is not just a matching service - it is a system where clinical trials will be explained and reviewed so we have more information to go on when selecting a clinical trial!
12/26/18 Do Corticosteroids Diminish Immune Checkpoint Blockade Efficacy?
Although this article is about checkpoint inhibitors in lung cancer, the same might apply to brain tumors. It has already been shown that steroids may decrease the effectiveness of other brain tumor treatments. Unfortunately, there are times when steroids are needed so we can't just discontinue them. (Note: if on steroids - you can not just stop cold turkey - they have to be weaned off on a specific schedule or you can die!)
12/24/18 Tumour treating fields in a combinational therapeutic approach
Good review of how Optune works and talks about how it may work better in combinations.
Our virtual trial is trying to identify combinations that work well. If you are using combinations, make sure to register with our virtual trial project virtualtrials.com/ click on virtual trial. We will be able to identify good combinations faster than any trial can because patients are doing these combinations now and nobody is tracking it. When the researchers propose a trial of combinations, it takes about 3 years and lots of money to do one combination. There are many possible combinations out there. It is impossible to do a formal trial of each.
12/24/18 Targeting cellular metabolism using rapamycin and/or doxycycline enhances anti-tumour effects in human glioma cells
This study identifies a few promising combinations of readily available drugs. However, it also shows that it is hard to predict which combinations will work in an individual. Different cell lines reacted different ways, and sometimes made the tumor grow faster instead of helping. More research needs to be done but I think this is a step in the right direction. They may be able to find readily available (and sometimes cheap) drugs that can be added to the standard treatments to make them work much better.
12/21/18 FDA TO FACILITATE ACCESS TO UNAPPROVED DRUGS
This sounds like a great program. We have been helping patients get access to experimental treatments for a while and it takes a lot of time on our part, the doctor’s part and the drug companies' part. I hope that this will smooth things over.
If anyone tries it, please let me know how it works out!
12/19/18 Dopamine Receptor D5 is a Modulator of Tumor Response to Dopamine Receptor D2 Antagonism.
I have written a lot about this drug (Onc-201) lately - I am excited about it and we (the Musella Foundation) have a special interest in it because we gave grants to help them get this far! This study shows that it may also be good to treat many other types of tumors that overexpress the target! Right now for brain tumors it is in clinical trials for DIPG and high grade gliomas that have the H3 K27M mutation - which usually occurs in younger people with tumors in the midline of the brain.
12/15/18 Finding Hope in the Face of Brain Cancer
This is a nice story about a patient with an H3 K27M mutant glioma, which is one of the worst types of brain tumors.
This involves the drug Onc-201, which the Musella Foundation has given a few grants to help develop!