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This is a guest post by Michael Whitley, 46, who was diagnosed with stage 4 clear cell renal cell carcinoma in 2019. He is an engineer and lives in Huntsville, Alabama.

Michael Whitley, left, driving home from Vanderbilt with his boyfriend, Michael Mueller, in July.

Since my scan in November of 2022, I have had 3 more CT scans. The first was in February of 2023. My lung metastases were showing some enlargement. My oncologist, Dr. Brian Rini at Vanderbilt-Ingram Cancer Center in Nashville, and I made a decision to increase my Cabometyx (generically known as cabozantinib) dose from 60 mg to 80 mg and re-scan 2 months later. I mostly tolerated the increase dose well.

My next scan was in April 2023 and it showed stability – my tumors were the same size. My most recent scan was in July 2023 (last week as I write this). During this interval, I found the side effects of 80 mg Cabometyx harder to tolerate. Mostly fatigue and the brain fog that comes with excessive fatigue.

This third scan showed that the Cabometyx has stopped working for me. I had an increase in all my metastatic sites, mention of a new liver metastasis, and mention of multiple pancreatic metastases. My pancreas has never been mentioned on any prior report, but my oncologist says pancreatic metastases are hard to see and often not mentioned on radiology reports until they get larger. The good news is that pancreatic metastases indicate that my cancer will respond well to targeted therapy with tyrosine kinase inhibitors (TKIs), which I have responded to in the past. Our plan going forward is to switch from Cabometyx to tivozanib (sold as Fotivda), a newer approved targeted therapy for kidney cancer. I’ve been off the Cabometyx for a week as I write this and I’m enjoying the lack of fatigue but also mindful that the cancer is growing. I’m waiting for insurance approval for the tivozanib and hopeful that I can start taking it this week.

Michael with friends at his 46th birthday party in July.

Tivozanib is my fourth-line of treatment and my 4-year cancerversary will be in September. I’m grateful for the time that I’ve had since diagnosis but I’m worried that my options are running out even though there are still more TKIs we can try. Every bit of progression is worrisome. It is like trying to hold back a tidal wave. Having confidence in my care team has been critical to maintaining any sense of calm through this process. My hope is that research can open new treatments and clinical trials that can treat me or – dare I even hope – cure me. My goal is to stay alive and healthy long enough to benefit from these future treatments.

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