For nearly 2 years now my family and I have been trying to keep a 2nd primary, rare brain tumor at bay. But between countless rounds of brain radiation, surgeries and chemo, my rare brain cancer, a Rela-fusion Ependymoma, has managed to evade all.
Last July, after my 2nd resection, the tumor starting showing up in scans within a month of surgery. Post Cyberknife radiation treatment did zilch to stop it nor prevent other lesions from growing as well.
Fast forward to February 2022 and what would be my 3rd craniotomy resection (my 1st at Sloan Kettering, with an extremely talented surgeon that managed to remove all lesions)! However, after every resection, these tumors tend to grow back quickly, so timing of post-surgical treatment is crucial.
I did my homework. My Sloan team did too. And actually, the notorious Lisa De’Angelis @ Sloan, Lisa M. DeAngelis was the first to mention trying a PARP Inhibitor. Technically PARP’s have nothing to do with my type of brain tumor, but the caveat is my germ-line BRCA1 mutation, passed down from my Mom’s Grandmother to my Grandmother, to my Mom and to both my sister and I; hence germ-line. It is in every cell of our bodies. Can/could this be fueling my brain ependymoma? My Sloan team thinks it’s definitely a possibility. The head of Neuro Oncology research at the NIH is also in agreement to try the PARP.
BRCA related cancers are known to be aggressive. Both my mom and I are triple negative breast cancer (tnbc) survivors. My Rela-fusion ependymoma is definitely on the aggressive side too, leaving little to no room for PFS (progression free survival) in-between treatment and surgeries.
PARP Inhibitors interfere with cell DNA repair, preventing cancer cells from replicating or repairing themselves in order to grow/spread. This has recently become a routine treatment plan for BRCA breast and ovarian patients post chemo and surgery. One can be on a PARP Inhibitor for up to 2 years. This was not part of my treatment plan since my tnbc treatment ended over 5 years ago. PARP’s were non-existent or still being studied.
If somehow BRCA could be fueling my Ependymoma, and the PARP works, it could be a game changer for so so many!!
Since Ependymomas are more of a pediatric cancer, they’re not testing kids for BRCA. At least I don’t believe they are. And while BRCA + women screen early for breast & ovarian cancers, as well as preventative mastectomies and oophorectomies, then perhaps early brain MRI’s might also become protocol.
I start treatment soon. I’m still healing from my 3rd craniotomy, but would love nothing more then to share with you all if the PARP works!!!
Til next post Thrivers 💗
Breaking BRCA+ 