With my 60mg dose of Cabometyx this Wednesday, I’ll have been on the drug for three weeks. Here’s what I can report: I’ve lost just over 40 pounds (about 14 since starting the drug). I have retained 75% of my ability to taste, but have real issues with a tender mouth. It feels like there is full-time effervescence on my tongue, much like the sizzle on the front of your tongue when you take a sip of cold Coca Cola right out of a frosty bottle, but without the awesome, sweet, caramel flavor.
Flavors like Coca Cola and my great coffee morph quickly toward effervescent and metallic, so some simple pleasures like a cold Coke or a great cup of coffee are wasted on the new me. I am sensitive in my mouth to cold and hot extremes, too. Meat is completely off the table. I was particularly saddened to have to turn down a juicy slice of John Strawbridge’s Easter brisket. It looked so damned good, but I knew it would set me up for a sick feeling for the rest of the day, so I declined.
When I took Votrient for 15 months, I threw up almost every day during that period. I was sick when I awoke each day and the nausea was aggressive. The nausea from Cabometyx is different. It is more pervasive, but doesn’t generally end with vomiting. It just hangs over you during the awake part of your day. So, eating is still an issue. I really don’t know if I’ll be able to eat something until I start to put it in my mouth. Sweet potatoes seem to always be a winner, so I keep them on hand.
Now for what I hope is the good stuff: The deep bone pain I have experienced since just before we found out I had a new bone met in my spine, is gone. I’m not having to take any pain medication, not even Tylenol, and I get the distinct feeling from my body that something good is going on.
Buoyed by optimism from the realization that less pain certainly should mean less tumor, I’m getting plans in place to get out to Dallas for a consultation with the neurosurgery/radiation team. I’m hopeful that scans in 5-6 weeks will show we’re getting good tumor reduction and that shrinkage will make a spine surgery and radiation treatment just what I need to restabilize my spine and put this disease process back on its heals.
We continue to be grateful for evidence that the prayers of many are working to heal my body and we continue to appreciate the kindnesses shown to my entire family during this next round of living with cancer.
I know I appear to have abandoned many of my brothers and sisters who are in full-fledged battle with this godawful disease. I’m still here, still channeling the prayers I’m receiving right onto you. Still mentioning your names in my daily prayers. Still doing what I can to help you understand that what goes on between your ears is the most important ingredient for a NED (No Evidence of Disease) statement from your medical team.
We have a solid plan coming together and with that plan comes strength.