Friends and Family,

We got the scan results last week from my latest CT. The cancer shrank again! Cue the fireworks! No need to wait until the Fourth of July!

But we’re not relying on short-term results. I was scheduling a flight to Denver to get into one of four trials at the University of Colorado when the Rybrevant (amivantamab) trial in Portland, Oregon, my hometown, came up. Despite this, Genevieve and I flew 1,200 miles to sign informed consents and have my tissue biopsy tested in Denver. Why would I do that when I already had an option? Because we didn’t know if Rybrevant would work—or for how long.

I’m four months into this trial. If it hadn’t worked—or when it stops working—it would take time to start over in another trial. That time can be crucial.

Here’s my example. It took a week or two to get an appointment in Denver. Then, it took more than a week for my tissue biopsy to be sent from Portland. It took another three weeks to find out I didn’t qualify for any of their trials. That means it would have taken five or six critical weeks—while my cancer was growing—to find out I would have to start over elsewhere. I wish I could say bureaucratic delays are rare, but I’ve run into similar snags at two other hospitals. In one instance, it took a doctor weeks to order a liquid biopsy test, even though I prodded him every day—and then I had to urge the hospital’s lab for another week or two to send the sample to the other lab.

I know if I need a new trial, I already have a foot in the door in Denver. This might cut weeks out of the process when every day makes a difference.

A huge factor in such matters is your oncologist. Here is what I think makes an excellent oncologist (in my case, for lung cancer):

  1. This is the most important thing: Get a specialist for your type of cancer. I’ve had seven oncologists. The two who almost got me killed were not specialists.
  1. As soon as your cancer shows progression, they order a new biopsy. (Always get a new biopsy!)
  1. They collaborate and discuss options with you, and they make a plan you can agree with. Time is critical!
  1. They consider clinical trials. Everyone I know with active cancer who has lived 10 years or more has been in at least one clinical trial, and some have been in six or seven! I’m on No. 3. 
  1. They strategize about when to stop your current treatment. If you are entering a trial, it will have a “washout period”—the time you must be off your old treatment before starting the new one. If it takes six weeks to get into a new trial, your cancer could go wild. Remain on the old drug as long as possible.
  1. They make contingency plans. Ask, “What do we do if this treatment fails?” and don’t let them leave the room without giving you an answer.
  1. They really care. Nothing has made me feel safer than when my oncologist said that even if I were in a trial somewhere else, she would always have my back.

I’ll get off my soapbox now. I hope treatment is going well for you, and if not, that you have a plan of attack.

Love, Dann

To read more of Dann Wonser’s blog posts, including “Pulling a Rabbit Out of a Hat: Last-Minute Access to a New Lung Cancer Drug," click here.