What would I do if I was diagnosed a Glioblastoma today
It seemed useful to me to take a cue from a recent interview with Al Musella and try to answer this difficult question. There are several possibilities. Standard of care treatment includes: Surgery, Radiotherapy and Chemotherapy with Temozolomide. With this approach, the chance of surviving 5 years is about 5%. However, if you use the Optune device (which in Italy is unfortunately not yet part of the standard treatment) my chances of survival at 5 years jump to 24.9% (if I use it 90% of the time).
There are 3 phase-3 clinical trials active in the world today. One involves radiation therapy during surgery. The others involve treatments that in the previous phases have prolonged survival by a few months and would be interesting but they foresee a control group (i.e. patients who receive only the standard treatment) and do not allow the use of the Optune device (so you have an uncertain potential advantage by forgoing a known benefit). Historically over the past 50 years, the Optune device trial has been the most successful while most other Phase 3 clinical trials have failed. We are now awaiting the results of the phase 3 DcVax trial which may be promising but these are not yet available at the moment.
There are about 150 phase 1 or 2 trials active in the world but it is unlikely that any of them will make a big difference in patients’ life expectancy. The results of clinical trials are known only a few months after their completion.
There are several drugs approved for other diseases. The rational choice in this case would be to choose an “off-label drug cocktail” based on the genomic analysis of my specific glioblastoma. Following this approach is currently almost impossible unless you find a doctor willing to follow the an individual patient and help him along the way. This would certainly be my choice, especially if the outcome of this approach could be tracked for each patient. Pharmaceutical companies are not interested in this approach and without having the data of each patient it is not possible to learn and benefit others.
As for the Surgery I would look for the best center available to obtain the maximum resection possibly using Gliolan which is a drug that helps the neurosurgeon to see small groups of glioblastoma cells to increase the possibility of removing them. I would also consider the possibility of inserting a Gliadel wafer that is to do intra-operative chemotherapy if the lesion is not close to the ventricles or I am not about to enter a clinical trial that excludes its use or if I am not using some form of intra-operative radiation.
As for radiotherapy, I would try to use proton therapy or some form of advanced radiosurgery to maximize effectiveness and reduce side effects.
As for Temozolomide, I would use it during and after radiotherapy (for 6 months) only if the molecular analysis reveals that my glioblastoma has methylated MGMT. If the tumor is non-methylated, I would try to use the drug Val-083 instead, although this is not available in Italy, because it is now known that the efficacy of Temozolomide for non-methylated tumors is almost null by toxicity is not null.
With regard to immunotherapy, there are some that have shown remarkable results on a limited number of patients. For some vaccines and in some cases of genetic therapies about 20% of patients lived more than 5 years with minimal side effects. So if I could I would try one or maybe two of these treatments. The Polio Vaccine trial looks promising as well as that of CMV, Survaxin and Gliovac.
As for the Optune device, which among other things is not available in Italy, it would be important to use it in the initial stages because in this case it is more effective even if some clinical trials do not allow its simultaneous use.
The choice is certainly difficult and it would be important to have a team that can help the patient and their loved ones to navigate the different possible options for treating a Glioblastoma. In the coming months, we will try to develop an evolution of the Chatbot on this site to provide an advice that then has to be checked by your doctor.