Searching for NED

Searching for NED

The verdict is in: my scans show progression. My most recent regimen involved a hysterectomy and medicine that caused a mouth full of blisters, but it was not keeping my breast cancer at bay.

Even though we’ve heard this news before, it always feels like someone pulled the rug out from under me. One might think I would mentally prepare myself for bad scan news, but I refuse to let cancer turn me into a pessimist.

The truth is, I’ve been lucky in the more than two years since I was diagnosed metastatic. My body has responded to multiple drugs, at least for a little while; my most recent drug regimen is the first one that did not work for me at all.

As many of you know, the name of the metastatic game is “Time until Progression.” It’s not a matter of if my cancer will return, it’s a matter of when. We’re fortunate for the many drugs available to prolong our lives in stage 4, but there is no silver bullet yet. And since there is no way to determine which drugs my cancer will respond to until after a round of trial and error, we live our lives in three month intervals between scans, analyzing every muscle pain and headache as a sign that the next scan might show progression.

People can see scan reports of NED (No evidence of Disease) for years, but NED can be a shifty and wiley character. I have had the pleasure of dancing with NED, but it wasn’t for very long.

We hang our hats on the hope that one day advanced cancer will really be a chronic, treatable disease like diabetes – that’s the anecdote my doctors all tell me when I ask too many forward-thinking questions. I do believe we will get there in my lifetime, but until then, I will keep hitchhiking from one drug to another…searching for NED.

In the past when my scan showed progression, my medical team laid out a very clear “gold standard” next step. This time we appear to be at a crossroads, because they offered me two paths and asked me to choose.

Even though I have excellent medical teams in two top-rated cancer hospitals, it is up to me to drive this bus. Don’t get me wrong – I am not advocating ignoring good medical advice, but our lives are at stake, and we need to act like it. Do your own homework, even if it means questioning the recommendations or seeking another opinion altogether.

We found a third option: a clinical trial.

So after 14 days with no medication in my system, a barrage of baseline tests and scans, and a mountain of consent forms and questionnaires, I am officially enrolled in a phase 3 clinical trial for BMN-673, a PARP inhibitor designed for metastatic breast cancer patients with a BRCA1/2 genetic mutation. PARP inhibitors are part of the next generation of cancer drugs – they actually work with your DNA to fight cancer. On paper, it looks like the perfect trial for me. (You can read more on PARP inhibitors in “A New Hope.”)

My stats have been submitted for randomization, and I have 2:1 odds of receiving the oral trial drug or the standard care chemotherapy. I finally have my next step, and that’s where we are, still searching for NED.

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