Dealing with the Daratumumab (The New Chemo)

I admit I have mixed feelings about this change, mainly because I am eager to get this new chemotherapy Darzalex over and done with, at least this first go-round.

On Tuesday I was 15 minutes late arriving to the Dr. James A. Patton Infusion Suite at the medical center. In my rush to get out the door to John’s so he could take the wheel and drive me to Pensacola, I left my cell phone at my house. Everyone knows it’s impossible to manage your life these days without a cell phone, so we had to turn around and get it. Thankfully, we were only a few miles away, but it still added probably 10 minutes to the trip. When I arrived at 8:15 to check in, I waited only a few minutes before Amber, the charge nurse over the infusion team, called my name.

“I’m sorry I’m late,” I said.

“Oh, that’s okay.” She smiled and said, “We’re not going to do the infusion today after all.”

She explained that she had spoken with Dr. Joudeh that morning about the two reactions I had during Monday’s long infusion session. He decided that it might be better if I took a different steroid, specifically Prednisone, along with 25 mg. Benedryl, which I have in my medicine cabinet, three days prior to the next Darzalex infusion, which will be next Friday, 26 March. She also needed to take out my IV. She told me that Dr. Joudeh wanted to hold off on placing the port in my chest for now depending on how I did on the next infusion.

I admit I have mixed feelings about this change, mainly because I am eager to get this new chemotherapy Darzalex over and done with, at least this first go-round. Monday’s session was a marathon for me with the placement of the IV and preparatory medications of Benedryl and a steroid administered an hour prior to the slow IV drip of the Darzalex. They are very, very cautious about this one, particularly where reactions are concerned. That is not to say they aren’t cautious about all of them; they most certainly are. But in my mind, my reactions were very minor, so I was surprised about the change.

During the infusion on Monday, she told me, “The most common reactions tend to come on very quickly and then go away nearly as fast. If you feel anything strange at all, please get my attention. I’ll be watching from right over there.” She pointed to the workstation of counters, desks, and computers where the nurses take care of countless tasks as they monitor patients on various chemotherapies. She explained that some of the reactions included a racing heartbeat, feeling flushed or dizzy, difficulty swallowing, headache, etc. “Even if it’s something that you’ve felt before and think is minor, we’re going to assume it’s a reaction to the Darzalex, so please tell me.”

It was probably an hour or two into the infusion that I found myself repeatedly taking sips of water from the insulated cup I carry with me all the time, then smacking my lips together. Hmm. I thought. My mouth and tongue feel funny. I concentrated for a minute on what I was feeling, wondering if it was just my imagination. No, I thought. It definitely feels…thick. I glanced over to the desk where the nurses were talking together as they worked. Amber will come over in a minute, and I’ll tell her then. Again, the feeling was so vague, I wasn’t really sure I felt it at all.

Within a few minutes, Amber came to check on me, and I told her how my mouth and tongue felt. She immediately stopped the Darzalex drip and told me she wanted to give me another dose of Benedryl before we continued. Afterwards we would wait 30 to 45 minutes before restarting the drip. She checked my blood pressure, which typically runs kind of low, and it was a little bit higher than the previous take. Could have been my nerves, although I feel like I’m handling all of this with a pretty good measure of composure, for the most part. I may expound on that notion further in another post because I’m fairly certain John and my son would dispute it.

Benedryl usually makes me very sleepy. I routinely take generic ibuprofen p.m. every night at bedtime to help me sleep, and it contains Benedryl. Lately, I admit that it hasn’t seemed to work very well, and in spite of the Benedryl injections into my IV this morning, I never slept. Instead, I tapped away at my laptop keyboard writing “The Scale Conspiracy” post for my blog as the Darzalex slowly dripped.

Everything went smoothly until around two o’clock in the afternoon when I suddenly felt a wave sweep over me. Okay, I thought, this one is definitely familiar. It felt similar to a hot flash without the prickly tingling in my stomach. My skin felt clammy, and when I slipped my fingers into my hair at the base of my neck, it was damp.

“Amber!” I called out. I was sitting across the room in the recliner in the corner, and she didn’t hear me. “Amber!” I called louder. Immediately Amber, along with every nurse that had been occupied with other tasks at the workstation, came running.

Whoa, I thought. Everybody chill. It’s just a hot flash – hah! I try to keep my sense of humor through all of this, but I have to say that in that moment, the admiration I feel for nurses welled up inside me. Yes, they are trained to respond, but it takes a truly special essence of character to exercise the patience and level of care they do every day for virtual strangers, many of whom are difficult, whiny, impatient, and usually feeling like crap. I couldn’t do it in a million years. I can barely tolerate the typical Walmart customer.

Amber again stopped the Darzalex drip, and I noticed that the bag was still just over half full. This time, we were done for the day with the plan that I would return in the morning to finish the other half of the medicine. That brings us full circle to my Tuesday morning late arrival at the infusion suite.

I have mentioned in a previous post about the complicated nature of the chemotherapy regimens associated with multiple myeloma. Thank goodness the nurses in the Infusion Suite -- Amber, Natalie, Ginger, Wendy, Michelle, Emily, Becky, and their supervisor, Laurie -- are all skilled and knowledgeable about the schedule associated with the Revlimid I was previously taking, the Velcade, dexamethasone, and now the Darzalex, because it took me nearly four cycles of the RVD to feel a measure of confidence about it myself. Just to give you an example, the dosage instructions on the front of my dexamethasone prescription reads: “Take 5 (4 mg) tablets by mouth on Days 1, 2, 4, 5, 8, 9, 11, 12 the day of and the day after Bortizomid.” Bortizomid is the generic name for the Velcade injections I get in my belly. There is a 7-day break between each cycle when I don’t get the chemo drugs or take the steroids, and I am in the midst of that break right now. The reprieve makes me sigh a little with relief.

For the next few days, the challenges include a visit to the dentist – my first in, would you believe 9 years? – and the drastic haircut tomorrow afternoon. I’m going to call Michelle at A Wig Boutique and schedule an appointment with her for Friday. Overall, I feel upbeat and optimistic, emotions that I know are divinely inspired by your thoughts and prayers for me.

I humbly thank you.