CR 225: Clear scans, except for the mucus

After last Thursday's infusion, I started feeling fatigued. By Sunday I felt like I had just gone through dose dense MVAC chemo, which is saying something. It hurt to move, to walk, or do anything. I also started coughing up amazing amounts of mucus. By Monday I was running a fever of 101 degrees. Those combination of symptoms were highly uncommon for me - most colds or flus did not incapacitate me like that. Aware that Dr. Hahn had warned me to let him know if I developed a fever after an infusion, I emailed him and the clinical trial nurse:

Following my nivolumab infusion on Thursday, January 28, I have started running a fever (101 degrees), headaches, am constantly fatigued, have muscle and joint pain. In addition, the productive cough that I thought was resolved has returned with a vengeance. I've been trying to manage this with over-the counter remedies (ibuprofen, Mucinex, a decongestant), but the fever is increasing and symptoms are getting worse.

I am scheduled for a CT scan on Wednesday, Feb. 3 at 10:50 am. I know that is not your regular clinic day. Would it be possible to be evaluated on Wednesday, or do you want to work me in tomorrow?

I also called the Hopkins triage nurse, who asked some additional questions and consulted with my clinical trial nurse. I was advised to go to Hopkins the next day and be evaluated by their urgent care team in the oncology department. They also moved my CT scan from Wednesday.

So Tuesday morning I blearily left for Baltimore at 6:30 am, grateful it was raining and not snowing. I went to the CT department and was directed to the triage group, who after some confusion sent me back to CT, where my port was accessed and I had my scans. I then went back to triage, where I was hooked up to a saline IV and had an impressive amount of blood drawn from both my port and my arm (the latter to ensure that my port was not the source of the infection). I also gave a urine sample and had a long piece of plastic shoved into my sinuses for a mucus sample (that was unpleasant!).

Soon the results began to be posted. The good news first: The CT scans showed no new metastases or other evidence of the cancer growing or spreading. Yay for nivolumab! The chest scan noted "new tree in bud nodularity in the posterior  aspect of the left lower lobe, likely infectious/inflammatory etiology  such as bronchiolitis". The neck scan found "fluid accumulation in the maxillary sinuses, suggesting acute sinusitis". And the nasal swab tested positive for "Influenza virus type A RNA". The PA told me that I probably picked up the flu during my visit to Hopkins last Thursday. Lucky me. But at least it wasn't an adverse reaction to the Opdivo. There are a couple of reported cases of adverse drug events to nivolumab causing severe lung damage and even death. They are rare, but enough of a concern that the clinical trial doctors keep close watch on any possible such effects. I'm glad that it's just the flu, and that I can continue on with the trial. 

I was sent home with prescriptions for Augmentin and Tamiflu. When I went to CVS to pick them up, I had my first shock as a Medicare patient: because I had not yet signed up for a prescription drug plan, I was charged full price ($50 for the Augmentin, $147 for Tamiflu). Note to self: find a Medicare Advantage plan that lets me continue in the clinical trial at Hopkins but gives me some drug coverage.

After dosing myself with those drugs and a liberal amount of Nyquil, I actually got a decent night's sleep and am feeling somewhat better today. I am grateful for the continued excellent health care I am receiving, and thankful for each day I can spend with my loved ones. I am keenly aware of how narrow the precipice is between life and death, and take nothing for granted.