Mayo Follow-Up and Next Steps (April 24)

 Friends, thank you for your continued and renewed prayers as our family navigates next steps in cancer treatment. I returned to Mayo for 3 days for several follow up studies and visits with specialists. We have good news including normal basic lab work, so oncologists can throw whatever they want at me. We have a stable brain MRI (the best news of all to me), and a PET/CT confirming evidence of cancer progression that seems limited to some “rouge” areas of the spine ONLY.  I am thankful that no activity was seen in the lungs, lymph nodes, other organs or bones.

Bones are generally easy to target with radiation by our brilliant radiation oncologists. So, we plan to radiate those “hot” areas of the spine. I will get technical here – we are going after T12-L2 which light up clearly in the photo. There is question of mild activity a bit higher at the T2 spinous process but that also has a fracture that may be healing to explain the finding and, more importantly, T2 was already irradiated 6 months ago. So, we will need to wait longer to see what happens over the next couple of months before triggering repeat radiation there.

While we are eager to irradiate the spine STAT, we are proceeding with a bone biopsy of the hottest zone, the T12 vertebral body, before doing so. The absolute soonest we can schedule that is April 30th for now. Our hope is that analyzing this rouge part of the spine will uncover another cancer mutation or cell surface protein to target with another specific drug. This might look like another pill like Selpercatinib. The next generation drug in that class is called EP0031 which would be obtained either by enrolling in a clinical trial or outside of a trial from the manufacturer.  Other possibilities include a cancer drug that has a tailored antibody helper, administered intravenously, called an antibody-drug conjugate (will explain how this works if we get there). Then there is the standard chemotherapy route. In non-small cell lunger cancer, the general recommendation is to use 2 platinum-based drugs called Carboplatin and Pemetrexed. I received 2 doses Carboplatin in November (when we thought this was breast cancer) without any serious side effects, so I am hoping that will remain the case if we include chemo in the future treatment plan.  

Down the more distant pipeline are technologies that include harnessing my own immune cells to target the cancer called tumor-infiltrating lymphocytes (TILs), or using engineered molecules that link my T-cells to cancer cells called bispecific T-cell engagers (BiTEs). We’re not there currently.

From a physical standpoint, my back pain is managed with Tylenol in the afternoons. Some nights require a bit more help with a prescription pain medication. Otherwise, my previous neurologic symptoms have nearly completely disappeared, and my energy is good. Emotionally, I’ve experienced ups and downs. The downs are not nearly as low as in November when I was first diagnosed, but I am sad that we need to change our strategy which has required time away from my family, and time away from home. There will be more time away from home as I travel to New York next week to revisit my candidacy for any other tailored therapies.

I can think of another who left his home and did not know where he was ultimately going. “By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise. For he was looking forward to the city with foundations, whose architect and builder is God.” Hebrews 11:8-10 Some more challenges came to Abraham later, but I digress a bit…

My hope and security cannot be on my health, my family, or my home. Those will all pass, even if my cancer is cured. The object of my faith and hope needs to be true, eternal, and secure. While I have moments of weakness, I also have confidence that the ultimate source of truth is God and that on the other side of this life is an eternal one for those who put their trust in Him. For me. Is it for you? In what or whom do you put your faith? Are you confident in what comes next?

Prayer for unshakable physical, emotional and spiritual strength and trust in God over the next 2 weeks is appreciated. May God be given glory through this specific suffering and may His will orchestrate every single detail.

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” Romans 5:3-5

With love and gratitude,

Joyce