I've always loved the book Enormous Changes at the Last Minute as much for Grace Paley's sublime voice as for the aptness of the title to describe so many situations in my life. Last week the title popped into my head again two days before I was to begin a clinical trial, my maintenance plan, or as I like to call it, chapter 2 of The Big Horrible.
Let me back up a little. The clinical trial I was going to be on was testing the efficacy of a combination of immunotherapy (promising for several cancers but not shown to be very effective for treating ovarian) with a drug called a PARP inhibitor. PARP inhibitors stop the PARP protein in cancer cells from repairing themselves when damaged.
Up until very recently, PARP inhibitors have shown great success keeping away disease in ovarian cancer patients who have the BRCA gene mutation. While this is great news, BRCA-positive patients account for only about 15% of the 300,000 women diagnosed with ovarian cancer each year. OC patients without the gene mutation could not get a PARP inhibitor for maintenance, except via clinical trial.
But while I was away on vacation, a paper published in the New England Journal of Medicine showed that one PARP inhibitor significantly increased progression-free survival (PFS) in ovarian cancer patients, including those who are BRCA-negative (like me). Given this, I'm now able to get this drug without joining a trial.
Enter Enormous Change at the sort-of Last Minute! No trial for me. Instead, I'll now take a PARP inhibitor daily (called Zejula, or Z. for short) for my maintenance plan, under the care of my current oncologist. While Z. comes with its own set of possibly-serious side effects, I'm definitely less anxious with this new plan.
For one thing, there'll be no question if I'm getting the PARP inhibitor or a placebo. And for another, I'm under the care of my trusted oncologist, rather than the trial doctors and nurses. It's 2 pills once a day in my house, rather than pills plus a monthly infusion in the hospital.
What I give up is a 40% chance of getting a PARP inhibitor combined with immunotherapy (which shows great promise), and a 40% chance of getting the PARP inhibitor plus a placebo. What I get is a100% chance of getting the PARP inhibitor. I'm happy with that.
I began taking Z. 2 nights ago, so I don't have a huge sense of side effects yet. I have read that mostly, they can make you nauseous, constipated, and really really tired. PARP inhibitors lower white blood cells, red blood cells, and platelets. If they get too low, I might need a blood transfusion. Really hoping that doesn't happen.
So at the moment, I'm feeling good, my hair is ever-so-slowly growing back, and I'm taking a drug that significantly increases progression-free survival (PFS) of this disease. I'm not ecstatic, exactly (stay tuned for Tales of Assorted Side Effects!) but, compared to the other enormous change at the last minute this past March, I'm feeling hopeful. And grateful, always grateful.
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