The Light At The End Of The Trial: 20 Months Of Cancer Treatment Ends This Week!

Throughout my treatments I have posted on this blog so I can quickly disseminate news and spare myself from having to re-live new news over and over. Well, this time I’ve waited to post on the blog because I’ve received so much joy in telling so many people in person about the next steps in our journey!

Quick recap: I’ve been on a clinical trial of immunotherapy (pembrolizumab) and targeted cancer treatment (axitinib) since May 2016, that’s about 19 months. 9 months into my treatment, about 98% of my diffusely metastatic cancer had melted away! Since then, my scans have plateaued, showing only scar tissue remaining from some of the brain and lung masses, and still slowly shrinking. This is as close to gone as we can expect it will ever be!!

At this point I like to think of it as a chronic illness- Chronic Cancer. Right now, my Chronic Cancer is controlled. In the future if there is regrowth, it will not be that my cancer is back and I have to take chemotherapy. Rather, if my Chronic Cancer flares up, I can go on the meds that control it- just like any other chronic illness. I don’t think I will ever say that I am cancer-free, because on a cellular level that’s just not true. But I know that my immune system now knows how to detect cancer cells in a way that it could not do on its own, and I rest in the hope that my body can now do the job it had forgotten how to do.

For the last 8 months we’ve seen no cancer growth and slowly shrinking scar tissue (good!). About a month ago, 17 months into treatment, I started developing an inflammatory arthritis affecting my knees, ankles, hips, shoulders, wrists, and fingers. Most likely, the immunotherapy has accomplished its goal of helping eradicate cancer (good!) and now is causing some autoimmune arthritis in my poor little joints (bad). AND what that means is that I get to come off of my trial medications 3 months early!!!(AMAZING!)!!!!

So TODAY we are leaving for a couple of celebration days in DISNEY WORLD then heading to Miami for my end-of-trial appointment!!

There’s such a mixed pot of emotions that I’m drawing from right now.

• I am so excited that the experimental drugs that God led us to have worked against my rare and impossible to treat cancer!
• I am so thankful to see how God has taken care of us and written this beautiful redemption story with our lives!
• I am hurting in my joints and walking around like the bug from Men In Black when I am at my worst, and hobbling slowly when I am at my best.
• I am thrilled to be able to be a part of the data for these amazing drugs. There isn’t evidence for when to come off of pembro for sarcoma patients, so hopefully my case can contribute to that body of knowledge.
• I am pumped out of my brains to get to take my amazing husband and 4.5 year old sweetie to Disney World!! This has been hard. So hard. We made it through in God’s care with his strength, his daily provision, his children so readily helping us along the way. And he’s given us such hope! But it’s still been hard. And when you do something hard, you CELEBRATE when it’s done!

I’m honored that so many of you care about my family, care about my story. My cancer isn’t gone, but it’s controlled and chronic and manageable. I’ve had 4 tumor removals in the 26 year span I’ve known ASPS, 4 times I touted the coveted label of “No Evidence of Disease.” Cancer free. Now I sit with cancer still present, but tamed to a mere carcass of the deadly metastatic threat it once was. The surgeries were the bandaid, immunotherapy and targeted treatment has fixed the actual problem. Not cured, but managed. This is the future of cancer care and I am humbled to be a part of it.