Friends and Family,
I should have been more specific when I was sending out my intentions. I should have said, “I’ll take Door Number Three ONLY, Monty.”
We got the results of my bronchoscopy/biopsy yesterday when we met with my oncologist. It showed that I do have a bacterial infection, but it also showed that the cancer has spread.
The progression also means I’m kicked out of the amivantamab trial, so it’s time for Plan B. You know that old saying, “plan for the worst, hope for the best?” Over the past week, I went to www.clinicaltrials.gov and found 243 trials that fit my general criteria (in the US, Stage IV NSCLC) and filtered them.* In the end, I panned eight gold nuggets and put them on my spreadsheet.
But what I hadn’t counted on was how fast the cancer is progressing. Since I wrote nine days ago, it has become much more difficult to breathe. Now it takes about two minutes to catch my breath after rolling over in bed. Dr. Sanborn is worried that by the time I started a new trial, it would be too late. I can’t argue.
The new plan is to take a course of antibiotics for the bacteria and to start chemo tomorrow (docetaxel and ramucirumab) and do four to six rounds, three weeks apart, to knock the cancer back. After that we’ll go on to a new trial. Dr. Sanborn will filter through my spreadsheet and the six options that her research nurses generated and make a recommendation.
I would be lying if I told you that the news wasn’t a blow. I feel even worse for Genevieve. She was holding back the tears when she told me that she wouldn’t blame me if I refused chemo. I told her I am determined to live and get through this, so we can return to better times. Skipping chemo is not up for debate.
Last week she was choking back more tears when I was being wheeled in for my bronchoscopy. What I felt was nothing compared to what I saw on her face. She can’t stand to see me suffering on chemo (this will be my fourth course), but those nasty side effects are just part of the package to give me a fighting chance. I don’t see chemo as suffering at all. It’s just the price of admission. And I’ve gotten pretty good at bouncing back.
I’m holding out a little ray of hope for rapid improvement in my breathing. I started the antibiotics yesterday, and today it seems easier to climb stairs without breathing like I just finished a marathon. It could be wishful thinking, but I’ll take it.
Thank you for the incredible love and support you give. It makes all the difference.
Love,
Dann
* For those of you who want to know my clinical trial criteria, they are: 1. Large enough to be more than proof-of-concept, which I guessed meant more than about 80 participants; 2. If trial is Stage I, trial has been open long enough that it’s likely past the dose escalation phase; 3. Trial site is in a major cancer center that has lung cancer specialists; 4. Treatment works with my EGFR mutation, which excludes any trials that use a PDL-1 inhibitor; 5) Trials that include the chemo drugs I’ve already been on; and 6. In the Western states. I’ll expand the states only if there’s no good alternative.
You can get one-to-one support finding trials or just use the trial finder tool at LUNGevity https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/find-clinical-trial or Go2 for Lung Cancer https://go2.org/treatments-and-side-effects/clinical-trials/. I’m sure there are other tools like this available.