CR Day 135: 18th infusion, clear CT

Today was another long day at Hopkins. Two hours each way in rush hour traffic. My port was easily accessed and gave a strong return of blood for my lab work -- whatever problems I had earlier in the year with a sheath growing over the tip have been resolved. I went upstairs for the CT scan and was told that someone had forgotten to obtain insurance company preapproval for today's scan. I could either wait for hours while Hopkins tried to get the approval; skip the scan; or sign a waiver that I would pay in case Hopkins could not get approval. I chose door 3, signed the form, and had the scan.

Insurance company approval is needed because, although I am in a clinical trial sponsored by Bristol-Myers Squibb, Hopkins still seeks insurance company payment for costs that are customary for ongoing monitoring of a metastatic patient. That apparently includes CT scans every 6 weeks, and the accompanying lab work and doctor's visits. Bristol-Myers apparently pays for the nivolumab drug and the associated costs to infuse it, as well as various supporting costs such as a portion of the salaries of the clinical trial nurse and other health care professionals. Running those trials is not cheap, and I am glad that I'm not having to pay for the drug. According to a recent Wall Street Journal article, the retail cost of Opdivo to treat metastatic melanoma is over $12,000 per month.

After the scan, I had to wait a couple of hours for the results to be read and my drug to be released from the pharmacy. I read the newspaper in the Hopkins cafeteria while I drank a couple of liters of Diet Coke to flush the radioactive contrast out of my kidneys. Eventually, I met with Dr. Park, one of Dr. Hahn's fellows, and put him through the paces while getting his views on the durability of nivolumab. He was not as up to date on the literature as I was, and took some time to do some searches and skim the latest articles before telling me that there was no data on point, and the best he could do was extrapolate from the same articles that I discussed in my post of two weeks ago. We also discussed how long I should continue with the trial, saying that I was of the view that I should ride this horse as long as it would carry me. He was inclined to agree, but said that we should discuss it with Dr. Hahn, who fortuitously entered soon thereafter. Dr. Hahn saw no reason to stop treatment, and said that, as long as there was no progression of disease, the only thing that I should keep in mind was the chance of toxicity, although the risks of that are relatively low, and this review suggests. 

I noted how I had noticed an increase in leaking from my neobladder at night, or any time I was in a horozontal position, for that matter. We discussed whether I should increase my dosage of imipramine, or try something else. Dr. Hahn said he wanted to discuss that with some of his colleagues, and I said that I would make a more conscious effort to track the frequency and circumstances of when my neobladder leaked.

Dr. Hahn said that the results of my CT scan of my neck, chest, abdomen and pelvis showed no change from my last scan in August: no evidence of disease, no inflamed nodes, no suspicious tumors. The pulmonary inflammation from my post-Africa infection had dissipated, and everything looked clear. Yay! I went up to the infusion center and had 377 ml of Opdivo pumped into my body, along with a liter of saline. When I reclined back, I started to leak. I smiled as I hurried to the bathroom, pulling along my infusion machine: I'd much rather deal with peeing my pants than dying of cancer.