How to read news on Glioblastoma Multiforme

9 February 2020 0 By Roberto Pugliese

I was trying to figure out what to write. Anyone who knows me knows that for this year I set out to write at least one news item per week as well as carrying on the project to enhance the chatbot by transforming it into a kind of advisor, gathering the news of each month’s research into a single news item, translating into Italian when ready the 2020 edition of the guide and develop an Italian version of the Virtual Trial of the Musella foundation, attract new collaborations to improve the site and raise awareness about this pathology.

Many visitors are reporting several interesting news to me but today I wanted to take a step back and reflect with the help of some case studies.

Anyone who is confronted with a glioblastoma multiforme directly as a patient or indirectly as a relative or friend of a patient is constantly looking for news that will give him/her hope.

With this article I propose to give some useful advice to be able to correctly interpret what we read, the risk is in fact to run into fake news or worse in those who will leverage your pain and your fear to sell you a hope.

First, then, look for as much news about a fact as possible, evaluate the relevance of the sources and look for scientific articles that talk about it. Knowing that something has healed a person does not mean much: at least you need to know how many people have tried it and how many have had a positive effect. Suspect if these data are not available because often they are not available because this often means that the therapy works worse than the standard one.

Immediately afterwards it is important to understand if the news can be useful for you, or rather, when it can be useful for you, because time is an important factor for diseases such as glioblastoma. We know that between the pre-clinical phase, phase 1, phase 2, phase 3 and launch, it takes at least 10 years for a new idea to arrive on the market and unexpected exponential accelerations are really rare.

The news reported these days on the super T cell that can defeat all the tumors that we have read in different articles is certainly true (different sources, authoritative institutes, scientific articles) and has to do with immunotherapy, CAR-T, the MR1 receptor and it is certainly potentially interesting but it is a pre-clinical experiment therefore not very significant for those who today face a glioblastoma.

Another interesting case is the story of Joe Tippens. In short, this man (who works in the business banking sector) in 2016 had been given 3 months to live due to lung cancer with metastasis in different parts of the body. He was enrolled in a trial at MD Anderson that would extend his life expectancy to 12 months to the maximum. But the unexpected happens: he is still alive and cancer free on January 15 of this year as you can read on his blog, he is the only survivor of a thousand patients who participated in the trial and it seems that the only difference that can explain the fact (besides evidently the specificity of the person) is a drug that Joe has taken without the knowledge of the MD doctors Anderson.

Joe Tippens’ blog says that a scientist from Merck Animal Health (veterinary research center) was doing cancer research by injecting different types of cancer in mice when he came across a medicine to treat dog parasites. which healed most of the mice. A few months later, this same researcher was diagnosed with glioblastoma multiforme which he treated with the same drug for dogs. Joe then took the same drug: FENBEN.

This news was taken from the Daily Mail and the online magazine of Oklahoma State University. In fact, the FENBEN dog drug molecule, Fenbendazole, seems to have interesting anticancer properties as confirmed by an article appeared in the prestigious journal Nature and a very similar molecule has proved useful at least in the pre-clinical phase for glioblastoma multiforme as confirmed from another scientific publication. It seams that the Oklahoma Medical Research Foundation has taken this seriously and has started a study that has so far collected around forty clinical cases of patients who have successfully used this drug. The immediate result is that the sales of the drug have grown enormously in the world leading to double the cost in a few days from 5$ to 10$ per pack.

Could this news be interesting today for anyone facing a multiform glioblastoma? It may be interesting for those who have chosen to follow the Ben Williams approach which in summary consists of taking a cocktail of off-label drugs that have proven to be somewhat effective against glioblastoma (for example, passing phase 1 or phase 2) and whose toxicity is tolerable.

So what to do? Rushing to buy FENBEN? Difficult to say. Certainly whatever your decision is, it is important to be followed by a trusted doctor who can help you understand the degree of toxicity of the off-label drugs you intend to take and their level of interference with the therapy you are following. There is therefore no recipe that is suitable for anyone because the human body is very complex and the same glioblastoma multiforme is complex and potentially different in different patients but it is certain that the famous saying “hope is the last to die” has a much deeper meaning than you can imagine.