MissionGBM FAQs - Part 1
You ask; We answer
We get lots of questions emailed to us at MissionGBM, so we thought we would attempt to answer some of them by posting an occasional FAQs piece. Here we go.
Why Did You Create MissionGBM?
MissionGBM was created to provide an evidence-based resource for brain cancer patients, their care teams and their caregivers in an effort to improve patient outcomes and the practice of Neuro-Oncology. No one ever expects to receive a diagnosis of brain cancer, but when it happens, rapidly identifying sources of high quality information to support decision-making is critical. Despite my 30+ years of Biotech experience (including having been involved with the development of multiple Oncology medicines), we initially struggled to obtain solid information upon which we could rationally design Julie’s treatment protocols. No patient should ever hear, “Let’s just put you on Standard of Care and hope for the best”. Unfortunately, far too many MissionGBM members hear exactly that at some of the world’s “top” brain tumor centers. How dreadfully incurious! We must do better. We hope MissionGBM can contribute to improving the state of the art in Neuro-Oncology research, patient care and investment.
How Can We Support MissionGBM?
MissionGBM is a self-funded labor of love. It was initially unveiled to share detailed information about what we did to design evidence-based treatment protocols for Julie (Results That Matter) based on the incredible efforts of Team Julie. We have no intention of ever charging fees for the commentary, neuro-oncology referrals and creation of investment syndicates that are at the core of MissionGBM (about that pesky “Pledge” button that Substack auto-inserts at the bottom of our posts – we cannot control it, so just ignore it as we will not turn on Paid Subscriptions). We are grateful that the MissionGBM community has grown rapidly, and that patients are gaining access to higher quality care apart from SoC. You are supporting us by offering to speak with new community members and share your experiences, best practices and recommendations of patient-focused, open-minded Neuro-Oncologists. Collectively, this is Real World evidence that is typically not published in scientific journals. In a typical week, we are active with 40-50 cases and see the associated clinical, imaging and molecular/genetic data for each case. Several Neuro-Oncologists and Neuro-Radiologists in the MissionGBM family have told us that we see more case data on a regular basis than they do. Behold, the power and value of a worldwide, evidence-based community. BTW, we strictly adhere to healthcare privacy standards, and we will never (EVER!) share any personal data with anyone unless the patient consents to do so. You will never see sponsor logos or click bait advertising links, and we have even taken steps to prevent Big Tech from training their AI tools on MissionGBM. Meta and Google have already scooped out your brain, but they really do not need to see your brain MRIs.
We Want to Donate to Something in Brain Cancer - What Would You Recommend?
We suggest that you consider making a donation to the National Brain Tumor Society by using this link.
The NBTS has been alongside us since Julie’s diagnosis in Dec-2021. Kirk Tanner, PhD (Chief Scientific Officer) is a charter member of Team Julie, and we talk (and often debate) several times per month about the most promising scientific and clinical programs that bubble up. David Arons (CEO) has been a wonderful resource in terms of providing commentary and connections regarding the non-scientific, patient support/advocacy issues that sometimes arise. If you are so inclined, please put some wind in the NBTS sails.
Why Do You Not Have the “Comments” Feature Activated?
With reference to our recent Quackfoolery post, the last thing the world needs is more unfiltered misinformation and chatbot sewage spewed forth from irrational people and overseas troll farms, especially when one is trying to position MissionGBM as a vetted source of evidence-based information about brain cancer. MissionGBM subscribers can reply to any email that you receive with a question for us, which is one of the reasons why we decided to initiate a series of FAQs posts.
What Does a Typical Day Look Like for You? Do You Ever Sleep?
There is no such thing as a “typical” day for MissionGBM. Every day brings multiple case reviews, investor meetings and scientific data reviews. However, we cannot predict when new cases will arrive, and sometimes they come in bunches. I am usually awake and reading scientific and clinical literature by 3:00am ET followed by any case reports or data that came in overnight. Before sunrise, we conduct Zoom or telephone meetings with MissionGBM families in Europe or Asia. Then, I lay out the known schedule for the day, and try to eat or take a quick shower so that I will not look like the Big Lebowski after a three day binger once the Zoom sessions start. Julie usually awakens around 5-6:00am, so I make sure that she is doing OK and get her rolling towards her favorite part of the day, which is the Morning Latte Ritual (Dear Nestle Nespresso people: We go through Nespresso capsules like a tornado goes through a trailer park). Over coffee, Julie and I talk about the schedule for the day, which always has plenty of caregiver duties, and sometimes also includes transportation to medical appointments. We alternate solving the daily Wordle puzzle, and frequently use the time to chat about difficult Goals of Care (GoC) topics (Note: HIGHLY encourage MissionGBM families to conduct their own GoC conversations early and often. The biggest non-medical problems reported to us by the community are the stressful and emotional “debates” that arise when a patient and the family/caregiver have sharp differences of opinion regarding GoC. Denial is not just a river in Africa.). Daily case and scientific meetings begin around 8:30am and run all day. If there is some time between meetings and case reviews, I try to squeeze in a bit of MissionGBM planning and writing (this post is being written at 3:30am). At least three times per week, I also budget time to knock out a quick, high intensity workout (cycling or rowing). It is very important to emphasize self-care when you are a caregiver. I generally try to get some sleep between 10pm and 2am, and sometimes I even succeed. I do the grocery shopping (All Hail Wegmans!) and most of the cooking, laundry, cleaning, etc. We have attempted to employ the service industry to “help”, but multiple attempts have actually made our lives more complicated because the contractors are about as reliable as official statistics from an authoritarian government (don’t even get me started on the abysmal quality of rent-seeking Home Health agencies). We are supported by some amazing neighbors and friends, several of whom are healthcare practitioners; have senior positions in the Biopharma industry; or have their graduate degrees in Oenology or the provision of #DrivewayBeers with little advance notice.
How About the Rest of the Family?
Given Julie’s GBM diagnosis in Dec-2021, we have been fortunate in several respects, not the least of which is that we were retirees and Empty Nesters with adult children who had launched into their careers and plenty of resources. Both kids are very busy with their professional and personal lives, which is somewhat helpful in terms of diverting their attention from a 24/7/365 focus on Mom’s condition. Julie insists that they “live their lives” and avoid contorting their schedules to make frequent trips home. Daughter Stephanie Rakestraw, MD is a Surgery resident, and son Alex Rakestraw is currently pursuing his MBA at the Stanford Graduate School of Business. Both children have top notch partners (fiancée in Alex’s case), which helps to keep them centered. Among the most difficult things that we encounter with MissionGBM are the families in which the brain cancer patient is 30-45 years of age with young children still at home and the need to remain employed for financial reasons. These people get every ounce of attention, connections and resources that we can muster because it is heartbreaking for us to imagine being in their shoes.
How is Tony the Cat Handling the Situation?
Plenty of research has been published about the positive effect of companion animals (aka pets) on the well-being of critically ill patients. Like many MissionGBM families, we are delighted that Tony is a daily part of our lives (well, with the exception of the occasional cat gack, usually on the carpet and rarely on the hardwood, at the very moment that we really need to be doing something else). He is a very social cat, who does not hide or sleep all day. He runs to the door when visitors arrive, and greets them with an affectionate foot rub. Tony frequently perches on my chest during the night while I am reading, and he seems to know when Julie is out of the house during her hospital stays. There is no substitute for unconditional love.