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Update on Cabometyx and Side Effects

Tom Clancy books open like a flashbang, they settle into 1000 pages of character development that feed straight into a jaw-dropping final chapter. If this cancer I’m so grateful to be able to live with was a Tom Clancy book, I would be in the character development phase. My Episcopalian peeps know it as the Green Season, the Catholics call it ordinary time. My altar is green. I am between tests and procedures, much like the Church is between major feasts, the altar is always green from the Monday after Pentecost through the Saturday before the First Sunday of Advent.

I’m so fortunate to be taking Cabometyx, a hope-inspiring, relatively new drug. I am 35 days into Cabo and the side effects are beginning to lay claim to pieces of my life, my body and my mind.

My last Green Season was my fifteen months with Votrient. It made me as well as I’ve been since I was diagnosed and as sick as a the bad end of a four-day drunk. So, I know about the Green Season. I know about the low times when you’re waiting to know if the poison you’re pumping into your body is killing its target cells. The time before the scan. The time between the big events.

Like I said, “My altar is green.”

People who have to take these drugs know that there are specific side effects that the drug may elicit in patients. Those side effects are outlined in the drug literature in a usually long list. In my mind, it is a lottery. Everybody gets a ticket, or maybe multiple tickets if you have certain medical proclivities (an easy to upset stomach, a quick gag reflex….etc.). Mother Nature reaches into the tickets and she pulls out the side effects with which you’ll be afflicted. Mwahaha! Man plans — God laughs.

Before I write another word: Despite the hard fact that TKI drugs and Mother Nature have visited me with diarrhea, vomiting, nausea, dry skin, bleached hair, dizziness, painful blisters on my feet, sensitive hands, insomnia, compromised taste buds, an aversion to meat, epic weight loss, loss of my finger nail cuticles, white circles around my eyes, temporary liver issues, elevated blood pressure, exposure to scan contrast media and dyes and other generally awful things — I am nowhere near giving up. I have too much to live for during what should be my most fantastic phase of life. An incredible life mate, four equally wonderful sons, Jill’s mom, both my parents, companion animals, church mates, friends, work colleagues, music, art, watching Columbus, Georgia thrive and become a great second-tier city. All these things add up to me wanting as normal an existence as I can muster.

So, I’m studying, asking questions and consulting with Dr. Pippas to make sure we continue to make great choices about how to treat this disease. I met with Dr. Pippas this afternoon to discuss my latest lab results. The numbers that we’re most concerned about relate to how my liver is managing the drug therapy. Today, despite my liver enzymes being in a stable place, my bilirubin is higher than Andy would like it to be. I’m slightly jaundiced and because of that, we’re going to have to make some adjustments to my dosage of Cabometyx. Andy is doing research and will make a recommendation in a day or so. This is something I had to do during my 15 months with Votrient. More than once.

My scans have been set for Tuesday, May 23. This scan will tell the tale about how I respond to Cabometyx. I’m hopeful — extremely hopeful — that we’ll see significant shrinkage of the spinal tumor, enough that surgery and radiation is possible. If that is the case, we’ll be making plans for being seen by Dr. Carlos Bagley and Dr. Robert Timmerman at University of Texas Southwestern Medical Center in Dallas. This is the neurosurgical/radiation oncology team that has risen to the top of my research as the best place for us to go. Thanks to Susan Poteat for providing input into that decision.

We continue to feel like we’ve made the right choices all along this long eight-year season of cancer. I am confident that I’ll still be bitching about how long we’ve had to deal with this in 2025 when it will have been 6 years of this. From my lips to God’s ears.

As things become more clear, I’ll share them here. From the bottom of my heart, thank you for reading this blog, being concerned about my wellbeing, and for showing love and care to me and my family.

 

May 11, 2017 | Tagged With: Advent, Cabometyx, Catholic Church, Columbus Georgia, Dallas Texas, Dr. Andrew Pippas, Dr. Carlos Bagley, Dr. Robert Timmerman, Episcopal Church, flashbang, Green Season, Jill Tigner, Mother Nature, Pentecose, TKI Drugs, Tom Clancy, University of Texas Southwestern Medical Center, Votrient| Filed Under: kidney cancer, renal cell carcinoma, Uncategorized | 27 Comments

Cabozantinib Arrives Tomorrow

This is a short note to let my readers know that the drug that has the best chance of making a dent in this spine tumor, Cabozantinib, arrives via overnight shipping tomorrow! I will begin taking a 60mg daily dose of this powerful drug and we’re hoping that it will begin to kill the tumor in my spine and pave the way for me to be able to get better. Whether or not, a smaller tumor would make it possible for another spine surgery to remove the screw from the tumor and restabilize my spine, is still up in the air. We will likely go soon to University of Texas Southwestern Medical Center in Dallas for a surgical/radiation consultation, so that they’ll be onboard with my case in the event surgery/radiation becomes a viable option.

I know that there are side effects with all of these drugs and this is one I haven’t taken before, so like we’ve done so many times before, we’ll be Star Trekking it. Going boldly where we’ve never been before. Based on my research, the combination of this promising drug, Cabozantinib, and a solid surgical/radiation plan will provide our best hope for me to return to health. I have purposefully avoided the list of side effects of this drug. I’m sure it’s not pretty. Please bear with me in the upcoming days and weeks. I’m sure there’ll be some physical changes like hair color and weight loss. I’m sure there’ll be some GI issues, too, so don’t stand too close. I may throw up on your shoes.

We are thankful that Dr. Pippas was able to make my case with Blue Cross Blue Shield of Alabama and we’re getting a shot at this drug. It has shown remarkable results in a lot of folks with kidney cancer. While I’m being thankful, let me say again how much Jill and I and our family appreciate all the love, cards, encouragement and concern as we embark on yet another chapter in a our lives, living with cancer.

 

March 30, 2017 | Tagged With: BlueCrossBlueShield of Alabama, Cabo, Cabometyx, Cabozantinib, Dallas Texas, Dr. Andrew Pippas, Jill Tigner, radiation, side effects, University of Texas Southwestern Medical Center, Votrient| Filed Under: Uncategorized | 26 Comments

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