CR Day 95: 15th Opdivo infusion

On Thursday I spent a good chunk of the day at Hopkins for my 15th infusion of nivolumab pursuant to my clinical trial protocol. Dr. Hahn was pleased to see that my long-lingering congestion had finally cleared up, and said that my bloodwork was perfect. As usual, it took the Hopkins pharmacy longer than promised to compound my custom-made sack of liquid, but I spent the time researching how to repair our various cars.

In the past few months, almost every motorized transportation device that we own seems to have quit working. All of our cars have over 100,000 miles, and are showing their age. Jennifer's Jetta needed a new transmission. Kirsten's Jeep needed a new clutch as well as a new master and slave cylinder. Spencer's Honda threw a rod and blew the engine; we replaced it with a used JDM VTEC. My Audi needed new CVT boots, valve covers, serpentine belt. On Thursday I learned it needed a new high pressure power power steering line. The mechanic explained that replacing the hose takes more than 10 hours of labor: remove the front bumper, radiator, wheel, hub, ball joint, and power steering pump. I think I'm done with all things Audi. Even the riding lawn mower has stopped working. And the boat down at Lake Anna needs a new engine, not that we have anywhere to stay since the lake house is down to the studs following the remediation for the water leak and mold. Life is good.

Everyone but me is back in school: Garrett is in his last year of high school, busy in marching band and worrying about college applications. Over the summer Kirsten moved back home, transferred to GMU, and changed her major from business to social work. Spencer is on track to graduate next year from GMU, and is thinking about getting his MSW. And Jennifer is finishing her MSW work at GMU. (Apparently karma requires three social workers in the family to offset all the damage that one lawyer has done.) Jennifer also is working 20+ hours a week with Life With Cancer, a non-profit largely funded by Inova Hospitals. She counsels patients and their families as they navigate the shoals of the sea of cancer. She's made of pretty stern stuff to do that.

With no job or school commitments, earlier this month I spent 10 days in Utah playing with my granddaughters. Rose and I read hundreds of books, had a Curious George binge party on Netflix, went to the train museum and parks, and celebrated her second birthday. Lily is 4 months old and is a roly-poly happy baby. I also visited with extended family, and enjoyed some long drives in the Wasatch Mountains. I grew up in those mountains, and each time I am in them my troubles seem to get a bit smaller, and my gratitude to God grows.

CR Day 78: 14th Opdivo infusion

Two weeks ago, I didn't get a nivolumab infusion because I had so much lung congestion. Dr. Hahn didn't think that I had pneumonitis, but decided that the safest option was to postpone the infusion and wait for the congestion to ease. The day after I started the Z-pak of antibiotics, I noticed at my mucus changed from green to clear -- a good sign. But after 10 days I still had a productive cough, and began to wonder if I was in the 3% of nivolumab patients who develop pneumonitis. I reviewed the recent literature regarding nivolumab and pneumonitis and was concerned enough to send the following email to Dr. Hahn:

An update before the Labor Day weekend: The good news is that the day after starting the Z-Pak, my bronchial mucus went from green to clear. The bad news is that I still have lung congestion and a productive cough, albeit not quite as bad as it was when I saw you last week. This type of lingering chest congestion is very unusual for me. I am wondering if I might be developing the type of anti–PD-1–related pneumonitis that has been observed in a few of patients treated with nivolumab, and as described in Dr. Nishino's July 16, 2015 JAMA letter. I'm scheduled to see you again on Tuesday, Sept. 8. Let me know if you want me to come in earlier in the day for another CT, have a pulmonologist consult, or whether I'm jumping at shadows. 

As it turned out, after I sent the email I noticed a significant drop in the amount of mucus in my lungs. So yesterday I braved the post Labor Day traffic around the DC beltway and made my way to Hopkins. My port was easily accessed and my labs were fine (although my glucose was a bit higher than usual, probably due to my mobile breakfast of blueberry pop tarts). I met with Dr. Hahn and Galina, the clinical trial nurse. Dr. Hahn was happy to hear of my recent improvement, but carefully listened to my lungs to verify the drop in congestion.  He didn't think that my congestion was pneumonitis caused by my Opdivo therapy, but instead likely was due to a combination of a bacterial and viral infection from Africa to which my body was unaccustomed. He said that he was ok with proceeding with today's infusion, but that I should immediately notify him if I noticed any increase in bronchial mucus. If that happened, he'd recommend that I start on a steroid and not have any additional nivolumab treatments until the lungs were completely clear. 

After a two and a half hour wait for the pharmacy to compound my drug, I laid down in the infusion chair and read a recent Grisham book (Calico Joe) during the infusion cycle. It's old hat by now, but nevertheless I am grateful for each infusion, thankful to the doctors, nurses, and techs who provide my care, and for the years of research and hundreds of millions of dollars of investment by Bristol-Myers, that have made possible the administering of this drug.

Tomorrow I am off to Utah to get some more granddaughter time: it will be Rose's second birthday, and I can't wait to read some books with her, and also hold little Lily. When I think of joy and rejoicing in my posterity, this is what it's all about.