“This is the response of the year.”

 Today we received very, very, very good news. Six weeks into treatment with Selpercatinib (including holding it for several days from side effects, then reintroducing and increasing it over 4 weeks, at what seemed like a snail’s pace to me), my PET/CT scan yesterday showed NO areas that lit up as metabolically active cancer. “Completely resolved.” Nothing lit up in my lungs (where it all started). Nothing lit up in my chest nor neck lymph nodes (where we biopsied to find out this was lung cancer). Nothing lit up in any of my many, many affected bones, including the spine where the pain had been most severe in November. My brain MRI showed that the 4 tiny spots that were suspected to be metastases and had been treated with gamma knife radiation have either “resolved completely” or have shrunk even tinier than the tiny size they had been. For those who are medically inclined or interested in the before/after images of the PET/CT, you can see them in the posted photos. The areas that light up in the after photo on the right are the normal metabolically active brain, oral mucosa, and urinary system where the label gets emptied. Nowhere else!

I told the news to the kids by speaker phone as David picked them up from school. Lucia shouted for joy. Lyle, also thrilled then asked, “So, is the cancer gone?” I love these kids. While this this doesn’t mean that I am cured, it does mean that the medication is successfully shutting off the mutated cancer cells, enough to where my PET/CT looks normal. 

This morning, we went over the results with the oncologist who was thrilled to have seen and shared the results with colleagues the evening before. To quote him, “This is the response of the year.” This is the best news we could have hoped for this soon. I am thankful for the tireless, passionate hard work of investigators and staff responsible for getting this drug into clinical trials in May of 2017, and for those responsible for getting the drug FDA approval in May 2020, in time for someone like me. And just this year, it was approved for children too.

We don’t know for how long this drug will be this effective. It could be for a very long time. We know there are other people like me with this rare RET+ cancer, most with stage 4 disease, who started this drug when it came into clinical trials 6-7 years ago, and are still on it, and living full lives today. I hope that is me too, and beyond. We asked if there were any updated statistics on how many are managing that long. While everyone is different, there is a trend that the quicker and more complete the response, the longer someone is likely to continue to live without progression of disease. I’ll take it.

I’m also boldly praying for more.

Whether we decide to credit the “what” of human ingenuity and science, I also know the “Who” behind this dramatic response. This is God being, well, almighty God. This is Him being so on brand, in my experience. I praise Him for listening to our petitions, for His peace throughout this ordeal, and for the gift of more time on this earth with the people I love.    

Those of you who know me well know of my love for the musical, “Hamilton.” In the closing number after his death, Hamilton’s wife, Eliza, sings:

“I ask myself, what would you do if you had more time
The Lord, in his kindness
He gives me what you always wanted
He gives me more time… You could have done so much more if you only had time
And when my time is up, have I done enough?
Will they tell your story?”

I ask myself the same question.  What am I going to do now that I have been given more time? Will I remember this moment when the next tough time comes? I pray not to squander this opportunity to point to God as the source of strength, hope, peace, and joy even in great suffering. So many of God’s promises came to mind this week as we were anticipating results. I remember them here as we celebrate this good news, particularly King David's Psalm 23.

“The Lord is my shepherd; I shall not want.
He makes me to lie down in green pastures; He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness for His name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me;
Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies;
You anoint my head with oil; my cup runs over.
Surely goodness and mercy shall follow me all the days of my life; (however many I have!)
And I will dwell in the house of the Lord forever.”

Amen!

What’s next? I’ll wean off prednisone over the next 4 weeks. I am optimistic that this will go well without redeveloping the hypersensitivity skin rash to Selpercatinib again. But you can be praying for that too. The next CTs and MRI will be in 3 months, so at the end of April. Thanks for reading! :-)

Love,

Joyce