Rare HOPE

I’m Audra Popp and very honored to share my story.

Often I am asked where do I find my strength..it is from my mom, she was diagnosed with metastatic breast cancer at age 42 and for the next 10+ years of her life spent most of it trying vigorously to beat it. She always said she didn’t care where it went, she just did not want it to go to her brain and we are grateful for her it never did.
It has been almost 20 years since my mom has passed away and I am comforted to know that she shares this journey with me!

Ironically, 2 years after my mom died is when I was diagnosed with a brain tumor at age 33. Now to some people this may have been absolutely devastating news…to me I looked at it a bit differently & I am glad I have. I am living proof that attitude matters in our treatment. As a realist but also an undeniable optimist, I have a motto that I live by:

Good and bad things happen to everyone …
But what matters
What defines us
Is how we handle them.

Fast forward now 18 years later from my original brain tumor diagnosis, despite the fact I am faced with yet another possible recurrence (tumor #7,) I remain quite optimistic and will keep advocating for myself and others as much as I can to find a cure, especially knowing new brain tumor research and treatments continue to be on the forefront.

The brain tumor I have been befriended with is a Grade 3 Anaplastic Pleomorphic Xanthoastrocytoma (PXA)
I know…..it is a mouthful!

A PXA is a very rare brain tumor and consider myself fortunate to live in MN and able to be treated at the highly ranked Mayo Clinic in Rochester.

Surgical removal remains the best first line defense for this type of tumor. and I have now undergone 6 craniotomies to do just that in 2001,2007,2009, 2014, 2015 and 2017. It only takes one teeny tiny microscopic cell left behind for a tumor to recur. In addition, thru the last 2 decades I’ve tried and exhausted all current FDA approved chemotherapy options, my tumor doesn’t seem to be chemo receptive, it’s rare and very smart! I also have had radiation in 2007 and Proton Beam Radiation Therapy in 2015 and the tumor keeps returning despite all the interventions I attempt. I’m currently being treated with Avastin infusions to control increased brain edema and radiation necrosis in hopes we can eventually do surgery again while greatly decreasing my risk of neurological or physical deficits. My next tumor treatment option is with mutation specific targeted drugs which unfortunately are not yet FDA approved for my tumors mutation, BRAF V600e, but the good news is that I still have options.

I have been extremely blessed to connect with about a dozen others with this same rare diagnosis from all over the country and hope by sharing my story here I will be able to help others and connect with even more.
Living Life the best I can from MRI scan to MRI scan!
Audra Popp
~With HOPE all things are Possible

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