CR 400: 36th infusion, another clear CT scan

Last week I had another CT scan. This time the tech at Kaiser got my IV placed correctly, so no radioactive biceps. The most exciting thing about the scan was that I had to drink two barium smoothies before, which I discovered creates an astonishing amount of gas. The dog was barking every time I let one rip, so he thought it was exciting, at least. For me, the best part was getting word that the scan was negative for any tumors or metastatic activity. Four hundred days into my complete response, I continue to stagger into the light.

Today I discussed with Dr. Hahn my options regarding ongoing treatments. I have three options:


1) I can suspend treatment now and resume it should there be any new metabolic activity.  Dr. Hahn and I agree that there is no compelling reason to do so, absent some autoimmune disorder that suggests my body had had enough nivolumab.

2) The second option is the default: end the trial on schedule in February 2017, two years after I started. I learned today that the determining factor is the passage of time, not number of infusions. Because I skipped at least one infusion due to lung congestion, and extended the time period between infusions by a few days for several other infusions, I'd get only 46 infusions instead of 48. After the infusions are done, I'd still be monitored with regular CT scans to see if there is any new metabolic activity.

3) Continue getting infusions after the scheduled end of the trial. In some cases, the trial sponsor (Bristol Myers Squibb) will agree to continue providing the drug to trial participants to see if the patients continue to tolerate the drug, whether it continues to have a benefit, and whether there are eventually some side effects. I'd want some more information about what has happened to the other guinea pigs who have done that, but the data just isn't there. As the clinical trial nurse said, "you are the data."

I'm leaning towards door #2, but will have months to check out option 3.

As usual, the Hopkins pharmacy was late in getting the compounded drug released. I finished at 4:30 pm, perfect timing to hit rush hour traffic in both Baltimore and DC. I passed the time on the drive talking on the phone with my mom, then brother, then sister. I'm not that fond of talking on the phone while at home, but don't mind plugging in the headset and chatting while behind the wheel. 

Speaking of being behind the wheel, now that our nest is empty, Jennifer and I are talking more seriously about getting an RV a pickup truck and fifth wheel) and touring the continent. We'd like to sell our lake house first, but meanwhile I've been learning more about the options available. It's fun to do, and with the ever-increasing likelihood that I'm not going to die in the next few months,  it's a dream that might even turn into a reality.