Easter week and spine update (April 15)

Friends, it is with an extremely heavy heart that I share this news. My MRI shows 3, possibly 4, spots on my thoracic spine where cancer has progressed through selpercatinib treatment. Each site was where there had been known spread when I was initially diagnosed. We don’t know why things are progressing at these sites.  Plausible explanations include the drug may not have been able to penetrate those affected areas well, the cancer may have developed another RET mutation (RET is the target for selpercatinib), there may have been another non-RET mutation acquired by the cancer to bypass the drug, or maybe something else.  Progression with selpercatinib treatment was something we knew could happen and had seen other patients with RET cancers develop. After all, the landmark clinical trial of this drug had demonstrated a median duration of 2 years of progression-free survival for people like me. So while we are not completely shocked, I was just really hoping we’d have more than 4 months of treatment before encountering this problem.

We are in the midst of figuring out what the next steps are going to be. A “liquid biopsy” test to look for new mutations that might be detectable in blood is in process for the next 3 weeks (it’s called a Guardant360). If there’s another mutation we can target, then I could be placed on a second drug. Another PET/CT has been ordered to see what lights up and will probably happen early next week when I’m already scheduled to be at Mayo for my quarterly follow-up. I anticipate the spine will light up given the MRI findings, but will there be other areas of cancer progression? We don’t know. If this issue is just in the spine, then I suspect we will likely pursue radiation, which looks like playing the game of “Whack a mole” to the few areas as they crop up. I know others who have managed 2+ years with this “weed the garden” strategy. Another option might be to pursue the next generation RET inhibitor drug in a clinical trial, which would involve visits to Memorial Sloan Kettering in New York City. We just don’t know yet but I hope things will become clearer by next week.

Due the moving of most of our tables and desks into moving pods this week, I am physically kneeing as I type this entry onto my laptop, which is propped on my daughter’s chair at the moment. This kneeling stance seems only appropriate as I tell you what we are going through and as I simultaneously plead to my Heavenly Father for faith. There are prayers. There are tears. There is hope.

It is no coincidence that this news has been laid upon me and my family on the week when we acutely remember the death, burial and resurrection of the One in whom we put our hope.  Hebrews 4:15 says “For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin.” Jesus intimately experienced and knows our suffering, our doubts, our temptation! Then in Luke 22:42, on the night that Jesus was betrayed by Judas and is later taken in for torture and execution, he pleads “Father, if it is Your will, take this cup from away from Me; nevertheless, not My will, but Yours be done.” Jesus pleads for another way if it is possible! But He also lays His life down knowing that God’s plan is perfect. John 15:13 says, “Greater love has no one than this, than to lay down one’s life for his friends.” God is love. Jesus is love. He is the only One qualified, holy and blameless, and the only One capable of acting in perfect love as to voluntarily die, experience excruciating separation from His Father, to atone for the sin of the world, including my sin. Praise to Him that through His death, He conquered death, the grave and rose again victorious.

Friends, please join us as we kneel once again before our King of Kings. Hebrews 4:16 goes on to say “Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.”

With love and gratitude,

Joyce