Newly diagnosed: glioblastoma
Glioblastoma diagnosis, what to do next.
Glioblastoma diagnosis, what to do next: our founder's family got this word too, not long after aphasia had taken the founder's mother's speech, so this page is written from inside it. The first week is appointments, scans, a treatment plan and a dozen new names, so this week puts the oncology team, the scans and the medications on one record, keeps the family close in one private place, and gives the patient a way to be heard if the tumor makes words hard.
What to do this week
Put every doctor on the Care Team page
One card per person: a name, a role and a phone number to tap and call. A card has no login; when a clinician should read the record, Give access turns the card into a login with a single-use code for that discipline, and the person joins at the IDC Team sign-in.
Where it lives: Care Team page · Read how it works
Every scan and visit on one calendar
Appointments is where the family books every clinical visit: the neuro-oncologist, imaging, infusion or chemo, radiation, telehealth, with where to go, what to bring, who is driving and who goes along. It is on the Schedule the moment it saves, and the day before, a reminder goes out.
Where it lives: Appointments page · Read how it works
A voice if words get hard
When a tumor sits in or near the language areas, speaking or finding words can become unreliable while the person stays fully themselves. One tap says a phrase; Medical Words explains hospital words in plain language with questions the patient taps to ask the team out loud: What are my results? What happens next?
Where it lives: Medical Words page · Read how it works
The Love Bucket, for the days between visits
Family and friends send notes and voice messages from their own accounts; the patient replays them any time and answers back with a tapped phrase or in the patient's own voice.
Where it lives: Love Bucket page · Read how it works
Today: the oncology team on one page, every scan on one calendar, Medical Words for the questions, and the Love Bucket between visits.
How to start
Create a free account: your name, email, a password and who the app is for, with the patient's name. Communicating is never behind a paywall, so nothing on this page waits on a card.
The first time you sign in, choose Set up the patient's care or Start talking now: a few questions, one per screen, saved as you answer, that open the right pages first and become the patient's plan.
From My People, tap Invite family and friends: each person gets a personal link that works once and a role (full access, family, or extended). On the Care Team page, add every doctor as a card to tap and call.
Read next
- Just got the diagnosis? Here's what to do next.
- Home care, home health, hospice or palliative care? What each one means, and when you need it.
- Do you really need a caregiver, or do you need a nurse?
- How to choose the right care provider for your loved one.
- How to build a care schedule for your parent or loved one.
- The tools and equipment you'll actually need to care for someone at home.
- How to coordinate family visits without overwhelming anyone.
- Caregiver burnout is real. Here's how to protect yourself.
Questions people ask
Does ExpressAgain do anything about the tumor itself?
No. It is a communication and care-coordination tool, not a medical device. It keeps the appointments, the medications and the readings the family logs, and it never interprets them; treatment decisions belong to the oncology team. The blog's Glioblastoma and speech says what families can do when words get hard.
Can the whole treatment team read one record?
Yes. Each discipline joins with its own code, Physician included, at the IDC Team sign-in, and reads the day plan, the medications, Health Tracking and the notes. A doctor who will not sign in can still be a contact card with a number to tap and call.
Is there a place for the family's own fear and hope?
The family feed is a private place for photos, voice notes and video, with big buttons for the patient to react; Comeback Stories gathers real videos of people who have come through, under Feel Good.
Is it free to start?
Yes. Free is where everyone starts, and communicating is never behind a paywall: tap to speak, the phrase boards, the sentence builder, Letters, the Phrase Library, lessons, Games and Play, the emergency screen, the Emergency Plan Card and the built-in voice. Free also invites 2 family members to the Family and Friends Feed. The Pricing page shows the plans side by side.
What happens after I sign up?
Sign up asks for your name, email and a password, and who the app is for. Then the guided setup takes four short steps: who the app is for and the condition mode, text and button sizes, a voice and the first people, then a review. Entering the patient's name and date of birth pins the two phrases hospitals ask for constantly.