Last Thursday, Paul and I spent most of our 15th wedding anniversary at the Seattle Cancer Care Alliance (SCCA). The plan was for Paul’s treatment to take place at the UW Medical Center (UWMC), so what were we doing at SCCA?
Before I answer that question, let’s take the way-back machine about a month into the past for a little catch-up…
The Monday after we got back from Houston (April 29), we met with a medical (chemo) oncologist, Dr. Christina Baik, at UWMC. She confirmed what Paul had learned through some web searches, that the two drugs used to treat oral squamous cell carcinoma are cisplatin and cetuximab.
Cisplatin is a long-time stalwart of the chemotherapeutic armamentarium. Paul’s uncle was treated with it in the 80s for a brain tumor, so Paul knows that it’s, as he puts it, one of the most “puke-tastic” drugs ever developed. It has a variety of debilitating – and sometimes permanent – side effects, including neuropathy, kidney damage, hearing loss, and bone marrow suppression. Paul already has some peripheral neuropathy from the CHOP chemo cocktail he got in the 80s, and losing any more finger sensitivity and dexterity would not be good.
The other option, Cetuximab, was just a dream back when Paul was getting chemo in the 80s. He remembers reading about the marvelous research starting into what were called ‘monoclonal antibodies’, and thinking how cool it would be to get one of those. Now here we are, living in the future: cetuximab is a monoclonal antibody drug, approved for treating Paul’s type of cancer in 2006.
Cetuximab (the ‘-mab’ ending indicating that it’s a monoclonal antibody) is not really chemotherapy, in that it’s not a poison. However, it does have side effects, the most common of which are an acne-like rash, and flu-like and lower GI symptoms that suggest you wouldn’t want to use it for fun. However, a small percentage of people have severe allergic reactions, especially to the first dose, so benadryl is typically administered before the drug.
But, we learned from Dr. Baik, the role of chemo for treating Paul’s cancer is secondary. The drugs are used to “soften up” the tumor, improving the effectiveness of the radiation treatment, but are not curative on their own. So the real question was whether Paul could be given enough radiation to zap the tumor without damaging all the important stuff around it too badly. The radiation oncologist decided that he could (more about that later), and the tumor board decided radiation with cetuximab was the best treatment option for Paul.
Now let’s skip forward two weeks, as preparations for Paul’s treatment were beginning…
On Wednesday, May 15, Paul had his radiation mask fitting at UW. After the fitting, it takes about two weeks for the radiation folks to get everything ready for the first treatment. And, since the protocol is to give the first dose of cetuximab one week prior to starting radiation, the rad-onc folks coordinate with the med-onc folks, and med-onc sets up the appointments for the drugs, and in Paul’s case, for the insertion of the PICC line that will be used to administer the drugs. So when Paul and I flew east to New York City on Thursday, we were expecting a phone call to confirm scheduling for the PICC and the first dose of drugs. The call didn’t come while we were in NYC. There was no voice mail when we returned home. Monday passed with no call.
So Monday evening, I searched the internets until I found a phone number on the UW website for Dr. Baik’s assistant, whose voice mail message revealed him to be an academic department assistant, not a medical assistant. But on his message, he reeled off the names and numbers of nurses to call if one was, in fact, the patient of one of physicians for whom he works. I called and left a long, tense voice message for Karen, Dr. Baik’s nurse, detailing Paul’s name and his patient number and the start date for his radiation treatments and what we needed from medical oncology this week in order not to delay his first radiation treatment next week and all of our phone numbers and please to call first thing tomorrow morning. (And I got through it without crying, which is what I tend to do when I’m angry that people are not taking care of Paul the way that they should.)
Karen called back the next morning, and told Paul that my message was the first she’d heard about this, but that they could schedule him to get his drugs at UWMC on Wednesday. He reminded her that he needed a PICC inserted before he could get his first infusion, and that he’d been waiting for almost a week to hear from them about scheduling it. She apologized, saying that someone had obviously dropped the ball. And she got to work, and called back shortly with a PICC appointment for Wednesday, and a whole slew of appointments for Thursday, but scheduled at SCCA, because they only do cetuximab infusions at UWMC on Mondays and Wednesdays.
Paul’s six (!) appointments at SCCA – patient registration (because he has never been to SCCA), blood draw, doctor visit, pharmacy tech, PICC dressing change, and infusion – were scheduled with plenty of time in between, apparently to allow for each one to run late without affecting his ability to show up for the next one on time.
After the blood draw, made easy by the new PICC, we headed upstairs for Paul’s noon doctor appointment. First in was Nurse Karen, who apologized again for the ball-dropping, and gave Paul his 3/4-inch-thick SCCA Patient Care Manual. Directly below the title are the words Knowledge is Power. Indeed. On the first page of the manual are the phone numbers and email addresses of important med-onc people. The rest of the manual appears to be undergraduate level reading, less useful for us than for newcomers either to Seattle or to cancerland.
Next Dr. Baik came in, and let Paul know that his bloodwork looked fine for the infusion. She told him that his first infusion would be a loading dose, double the usual dosage, and that future infusions would be half as much. As Dr. Baik left, she told us that the pharmacy tech would be in shortly for the “patient education” session on side effects and their management.
When pharmacy tech Kathy showed up, her first question was, “What do you know about the drug you’re getting?” Really? What kind of question is that? Paul responded, “A lot.” And things got worse from there. We already knew most of what she told us, but she presented the information in a way that didn’t allow her to gauge that. Also, she downplayed the rare cardiac side-effects in a way that led Paul to comment that those 1% are real people, not just numbers. The kicker was when she pulled out a prescription for meds to combat possible side effects: Zofran, in case of nausea; minocycline, an oral antibiotic to treat the rash; and Cleogel, a topical treatment for the rash. She explained that Cleogel is clindamycin… and Paul snapped, “I’m allergic to clindamycin.” Ironically, it gives him a rash. And, yes, the allergy was in his chart. She left the exam room to verify that Cleogel really is clindamycin; when she returned, she apologized, and handed me the scrip form with the Cleogel scratched out. (Dr. Baik also apologized via email the next day.)
Next, we stopped to visit with the scheduler, Keegan, who was trying valiantly to arrange Paul’s future infusions and associated appointments so that they played nicely with his radiation appointments at UWMC. This was more difficult than one might imagine; in the end, no two infusion days are scheduled the same. Might the scheduling have been simpler had it been done a week earlier? We’ll never know.
After getting his PICC dressing changed, Paul checked in for his cetuximab infusion. The receptionist gave him a pager, which buzzed a few minutes later. A nurse took us to one of the infusion “suites”, a small room with a hospital bed and recliner. Paul chose the recliner. I took the rolling doctor’s stool and table. The nurse hooked up the infusion pump to Paul’s PICC, dosed him with benadryl and steriods, and then started the cetuximab. Paul watched a movie on his laptop and dozed a bit. (The benadryl made him sleepy.) I did some work, wrote a bit, read a little. And two hours later, he was done.
And he felt fine. No nausea, no difficulty breathing, no heart attack. Whew. It was, as we’d hoped, a non-event.
By the time Paul was unhooked and released, it was almost 7:00 pm, too late to catch the movie that we’d planned to see. So we went home, snuggled with each other and the cats, and had a quiet, uneventful evening.
We’ve had happier anniversaries, but we’ve had much worse days in cancerland. The day could have been worse, and we’re thankful it wasn’t.