Waiting for CPI-613

This photo was taken at the ER on Feb. 14, waiting for my first CT scan. This is the first day I sought help for a mild abdominal pain and approximately 120 days before receiving my first treatment for pancreatic cancer. Lots of waiting.

Early observation... There is a lot of waiting with cancer. Waiting for lab results, waiting for appointments, waiting for treatments to start, waiting for medicines to pump through you, waiting to feel better.

Today is Wednesday, July 8th. Fifty days since I was diagnosed, 16 days since I was admitted to the study arm of the clinical trial at Vanderbilt, and 14 days since I actually started treatment.

I’ve had one full round of treatment, and as I type this, I’m sitting in a chair at Vanderbilt having my second cocktail of experimental and chemo drugs slowly pumped into a port in my chest over three days. The only thing that could make this cocktail more excessive would be if Sam Ross himself were mixing it at Attaboy in NYC. I hear they have one of those in Nashville these days too. That's another post.

The drug that we are here for is CPI-613 or Devimistat. It's the experimental study drug that is attacking the mitochondria of the cancer and seems to be having some success according to early trials. Those early trials started 10 years ago. Waiting.

We are going to have to wait longer to see how my cancer responds to six months of these drugs and how my body responds to the cocktail of chemo. While we wait, here are some initial indications of how the first 14 days of treatment focused on killing cancer cells:

• Improved mobility and flexibility in my back and abdomen.

• Pain management has eliminated 90 percent of all pain.

• I have more energy that I’ve had in weeks.

• My labs and blood work are all trending in the right direction, specifically my

white blood cells are up and ready for a fight.

• I’m sleeping through the night.

• Resting heart rate is down.

• I’m ready for exercise, walks, short runs, and building back muscle mass.

• My appetite is a little hit or miss, and I do have some mild nausea from time to

time.

In the past two weeks there has been a noticeable improvement in how I feel. In my book this is a win. After waiting more than a month to get a full diagnosis and to actually start doing something proactive, it is encouraging to see and feel this progress in a relatively short time. We have a lot more waiting ahead of us. There will be setbacks and some bad days ahead too, but for now daily progress is keeping heads up and spirits high.

Continued thanks to family, friends, colleagues and even complete strangers for all the texts, emails, calls, notes, and gestures of kindness. I have never experienced love and compassion so deep and authentic as this. It heals both physically, emotionally, and spiritually, and I am a different person as a result.

More to come…