Quackfoolery
In God We Trust. Everyone else must bring #Data
Dear MissionGBM Community:
You are awesome! We really enjoy hearing from you, and helping you quickly learn about brain cancer treatment options so that you can better navigate a very confusing and stressful time. In life, you have to play the ball where it lies…even if you have a buried lie in a wet bunker 250 yards from the pin. Our Mission: Fetch the right club for you out of our bag, and assure you that the putting surface is reachable.
As we say during all of our new case intake sessions (now numbering >250 cases), “We were in your shoes not that long ago, and we too, initially struggled to make confident decisions despite all of our training and experience. You are suddenly a member of a club that you never sought to join.”
The two most frequent questions that we get are:
Where do we start?
How can we understand and trust the torrent of medical information coming at us quickly from people wearing White Coats speaking a language that we do not understand, and asking us to make really big decisions under time pressure?
As we work with new cases and connect them to evidence-based information and top quality Neuro-Oncologists, the initial shock of the brain cancer diagnosis begins to give way to a thirst for identifying the best personalized treatment options for each case, and to establishing the rhythm of daily interaction between the patient, the care team and the primary in-home caregiver. We call this the “Journey”.
Inevitably, patients and caregivers will begin searching the internet and other sources of information in an effort to identify potential treatment options apart from SoC.
News Flash: The quality of information in many corners of the internet is…ahem…unencumbered by #Data, scientific rationale or even proper spelling and subject/verb agreement. We’re looking at you, social media forums!
In addition, when scientific and clinical publications are discovered, most MissionGBM families do not have the training and background to understand the content.
Amusing as some (most?) internet dribble is, it also confuses patients and leads to time wasting and occasionally poor quality self-treatment decisions that can actually harm the patient.
We have coined a term for the unedited misinformation about brain cancer and other medical conditions that flows our way just about every day: Quackfoolery.
If we cared to run an online MissionGBM store, you would certainly be able to purchase T-shirts, hats and beer koozies prominently emblazoned with “Quackfoolery”.
But we digress.
The mandate of MissionGBM is to provide a high quality forum for the dissemination of evidence-based information about brain cancers, and to help patients and their care teams make connections to design the best treatment options for each case.
As the email masthead says, “Evidence | Treatment | Science | Hope”.
Several dozen Neuro-Oncologists regularly talk with us, and enjoy participating in our arranged Zoom sessions in which experts in neuropharmacology, immuno-oncology, molecular oncology, management of treatment-emergent AEs, drug development, clinical trials and regulatory affairs can help them unpack their cases. A Nobel Laureate or two has been known to occasionally stop by. Brain cancer has a broad reach.
Note: These NOs tend to be younger, more open-minded and have a vocabulary that is more extensive than “Standard of Care” and “Come back in 8 weeks”. They also have demonstrably more knowledge and awareness of the tools of modern molecular oncology apart from just neuro-oncology SoC. Probably a self-selection bias here, but it gets Results That Matter, and that is all that the patients really care about.
Slowly, but surely, this is how we work together to make things better.
Quack-a-Palooza
In honor of Eclipse Day (at least in the eastern half of North America), are you ready for some fun? We offer, Dear Reader, for your amusement and education, some of the lowlights of the stuff that comes our way from the groups identified below.
Super-Food-anistas. These are usually caregivers who are pre-disposed to “eating clean”, and often want to tell us that their loved one’s GBM definitely came from residual pesticides in the food supply or military burn pits (Wait, did you actually serve in the military? No. Hmmm.). People send us all kinds of diets and claim that theirs is “The One to Abolish GBM”. Prior to MissionGBM, we had never encountered purple carrots, parts of sea urchin anatomy that we did not know even existed and various combinations of spices that we hope to never see on our pizza. We simply ask, “Where is your evidence?” and “Did it occur to you that, if an anti-GBM Super-Food existed, perhaps someone among the billions of people on Earth would have found it by now?”.
Drug Stackers. More is not always better, but you cannot tell that to a Drug Stacker. We understand that few people have formal training in pharmacology and drug development, so it is not surprising that the concept of treatment-emergent AEs is generally underappreciated. All oncology treatments have AEs. The trick is to anticipate, plan, mitigate and manage through the AEs in order to affect therapeutic benefit while preserving the best QoL for the patient. Homebrew treatment regimens that involve up to 15 pharmaceutically active substances* are pretty much guaranteed (i) to have stacked and possibly synergistic AEs; and (ii) to occasionally lead to a truly awful clinical SAE train wreck. The MissionGBM cohort includes a 30-something wife and mother whose husband was diagnosed with GBM. She is earnest and well educated, but not in the life sciences or medicine. She works as a lawyer – more on that below. She periodically calls/emails with Yet Another Homebrew Protocol, which always consists of no less than 5 drugs that are generally available for conditions other than cancer (e.g. statins, metformin, anti-depressants, GI drugs). The dialog goes like this:
MGBM: Well, [Name Withheld], it looks like you have been busy.
[Name]: Yes!!! After hours of internet research and reviewing a couple of papers from the Journal of Irreproducible Results, I have designed a new protocol and started my husband on it!!!
MGBM: Surprised, we are not. Are you at least familiar with the various online Drug-Drug Interaction tools? Have you talked to your husband’s neuro-onc?
[Name]: Drug-Drug What? What are you trying to say?
MGBM: Looking at your drug list, we immediately see several problems with synergistic AEs. How does your husband feel? Is he reporting any symptoms like tachycardia, blurred visit, hypoglycemia or fluorescent purple urine?
[Name]: Well, he does say that he lacks the energy that he used to have, and he has lost interest in eating. Sometimes he can’t get out of bed even after a full night’s sleep. Do you think these symptoms might be related to this new treatment regimen?
MGBM: God bless your husband…and particularly, your husband’s neuro-onc.
*Yes, we have seen drug lists of up to 15 active substances. Truth is stranger than fiction.
Religious Zealots. Our belief is that everyone has spiritual needs that they seek to satisfy, and we are supportive. Prayer chains and other spiritual interactions are a great way to address the shocking adversity that you have just experienced, and to engage friends and other parishioners to help support you during a time of need. Just make sure that you include the doctors, scientists and other medical professionals in your prayers as they are the people who work hard to develop and deploy evidence-based approaches to treat brain cancer. Also, please spare us the cockamamie conspiracy theories regarding how Bill Gates and his army of space lasers control modern medicine in order to alter humanity’s DNA for the purposes of World Domination. Turn off your cable news channel; sign out of your Meta feeds; and do something fun and memorable with your brain cancer patient…while you still can.
Lawyers. At first we were surprised at the percentage of lawyers in the MissionGBM cohort whose case outcomes and mOS were significantly worse than average. A real head-scratcher. What could possibly explain the data? We have developed a hypothesis, which will likely be impossible to prove, but it does divert our minds from reading more scientific and clinical literature at 3am. Lawyers are trained to argue (advocate?) and convince a judge, jury or opposing litigant that their position is the right one. Sometimes the actual facts matter, but having served on a few juries, we can confidently say that some lawyers seem to practice according to the adage, “Never let the facts get in the way of a good story”. In their world, one does not need to be right, one just needs to win. Tragically, science and medicine do not work this way. The only things that matter are facts, #Data and evidence (collectively, “Truth”). #Truthiness is not a substitute for Truth.
Dear Lawyers: Cancer cells do not care about the beautifully crafted argument that you have conjured up, unless the scientific and clinical #Data support it.
Please do not seek to argue with us. We will not engage because you are guilty of violating the Laws of Nature and dismissing key evidence. Your sentence is often a below average mOS.
Some Neuro-Oncologists. We are aware that we occasionally utter provocative things that are designed to get people to think critically about “the way things have always been done”. We do not expect everyone to agree with us, but if you want to debate, at least do your homework and come armed with facts and #Data. Rest assured that we will be prepared. Please refrain from communicating “facts” to patients when you do not have #Data to support your position (as the Directors of two of the largest Brain Tumor Centers in the US have done with multiple MissionGBM cases). Surely, you recognize that ndGBM and ndHGG patients are devastated and looking for answers (especially if they are uMGMT), and thus, do not respond well to “Let’s just put you on SoC. Advise that you go home and get your affairs in order”. That’s all you got? How incurious!
Finally, try to avoid the temptation to view brain cancer patients as merely (i) sources of Relative Value Units; and (ii) subjects for the clinical trials that are currently recruiting at your hospital, many of which lack a defensible scientific rationale and probably should not be open. Three times over the past two weeks, we have had to assist with the transfer of a MissionGBM case to another Neuro-Oncologist as a result of horrible SAEs brought about by inclusion in a clinical trial for which the patient was not eligible on the basis of the published Exclusion Criteria for the trial. Seriously, how does that happen?
Neuro-Oncology has a real brand equity problem with multiple constituencies, including payers, investors and a fair number of patients.
We must collectively do much better to improve the field. It is up to us to work together and challenge conventional wisdom, even if it means that fewer ill-advised clinical studies are conducted. Slowly, but surely, this is how we make things better.