As I mentioned in my pre­vi­ous column ^[1], I started treat­ment with the newly approved myeloma drug Empliciti ^[2] (elo­tuzu­mab) in Feb­ru­ary. I thought I would share more details about my ex­peri­ences with the drug so far.

Before I started treat­ment with Empliciti, I had enjoyed a drug holiday for the pre­vi­ous three months. I ap­pre­ci­ated the break from the side effects of drugs and nu­mer­ous trips to the cancer center.

Before the drug holiday, I was on Kyprolis ^[3] (car­filz­o­mib), Revlimid ^[4] (lena­lido­mide) and dexamethasone ^[5] (Decadron) for a year. Kyprolis re­quired in­fusions, on two days back to back, three weeks out of four. I was tired of the constraints of twice-weekly visits to the cancer center. As the year pro­gressed, the side effects worsened and my quality of life started to fade.

When I returned to treat­ment in Feb­ru­ary, I was ready for some­thing new.

When my myeloma spe­cialist mentioned Empliciti, I was intrigued. Empliciti is a mono­clonal anti­body that was approved by the FDA just last No­vem­ber ^[6]. It is for use in myeloma patients who already have been treated with other myeloma ther­a­pies. That definitely is true in my case – I now have been on five treat­ment regi­mens since my stem cell trans­plant in 2011.My mul­ti­ple myeloma is high risk and tricky. However, for­tu­nately for me, when one drug stops work­ing, myeloma re­search has given me another choice. For this, I am grateful to be living in this time.

At my local cancer center, I was the first patient to re­ceive Empliciti. I felt spe­cial, and a little nervous before my first in­fusion.

I learned that Empliciti binds to a pro­tein called SLAMF7 found on the surface of myeloma cells. Once the drug binds to the myeloma cell, Empliciti signals and stim­u­lates the im­mune sys­tem to destroy the myeloma cells. A Phase 3 study found that Empliciti in com­bi­na­tion with Revlimid and dexa­meth­a­sone was ef­fec­tive, and had rel­a­tively mild side effects, in patients like me where other treat­ment regi­mens were no longer work­ing.

One risk with some mono­clonal anti­body treat­ments is that patients may have an in­fusion reac­tion when the drug is admin­istered. This reac­tion is a dramatic in­flam­ma­tory re­sponse, which can in­clude a fever, chills, dif­fi­culty breathing, and some­times even low blood pres­sure. The risk of this reac­tion is highest with the first in­fusion.

There is a risk of in­fusion reac­tions when Empliciti is given to patients, so it is given in com­bi­na­tion with drugs that will prevent and man­age an in­flam­ma­tory re­sponse. These drugs are given one hour before the Empliciti in­fusion. I re­ceived Benadryl (di­phen­hy­dra­mine, an anti­his­ta­mine), Pepcid (famotidine), and dexa­meth­a­sone in­tra­venously, plus oral Tylenol (acetaminophen / para­cet­a­mol) for fever prevention.

What surprised everyone during my first in­fusion was my re­sponse to the Benadryl. Shortly after its ad­min­is­tra­tion, I became sedated. I mean very sedated, and even confused and agitated. I could not walk without assistance. I slept the entire six hours re­quired for the Empliciti in­fusion (Empliciti is admin­istered over six hours to de­crease the chances of an in­fusion reac­tion). I did wake up by the time the in­fusion was com­pleted, yet my memories were blurry. I was disturbed by my loss of con­trol.

As the week progressed, I noticed that the side effects were less harsh than those during the last few Kyprolis cycles. I did not ex­peri­ence the nausea, the bloating, and just feeling miserable for two days after the Kyprolis in­fusion.

The sec­ond week, the health care team gave me the same pre-drugs, but only half the Benadryl dose. Although I was not sedated or confused, I still slept most of the time, and was not awake enough to safely drive home.

At that point, everyone agreed that Benadryl was not the right drug for me. The pharmacist sug­gested we use Claritin (loratadine), an al­ler­gy med­i­cine unlikely to cause drowsiness, before my next in­fusion. I would take the pill at home one hour before the appoint­ment. The pharmacist reassured me that with each treat­ment, the risk of an in­fusion reac­tion would de­crease.

During my third in­fusion, I had the best ex­peri­ence so far. I ex­peri­enced no sleepiness with the Claritin, so I was able to drive myself to and from treat­ment. This is crucial for our family because my hus­band still works full time. My time at the cancer center became shorter because the drug could be given at a faster rate.

Unfortunately, by the third week on the Revlimid, I ex­peri­enced uncomfortable, yet familiar, symp­toms. I’ve been taking Revlimid off and on for five years, and I can tell you: This drug is not my friend.  I resent the low energy, con­sti­pa­tion, bloating, and dizzi­ness by the end of the 21-day treat­ment cycle.  My seven days off from Revlimid are precious.

My grown up self under­stands that I need to take the Revlimid with the Empliciti and dexa­meth­a­sone to fight the pro­gres­sion of my mul­ti­ple myeloma. However, my immature self can be heard whining about Revlimid.

After four weeks on the new regi­men, my IgA – my marker for myeloma cell growth – has de­creased sig­nifi­cantly. The new drug seems to be work­ing. That’s en­cour­ag­ing because, when I began the new treat­ment, my IgA was 11 times the nor­mal level, even though I looked and felt fine.

Over the last month, I have also made friends with my new port. I ap­pre­ci­ate the easy access, and that my hands are free during the long in­fusion time. I also swam sev­er­al times with no inter­fer­ence from the port.

After eight weeks of treat­ment with Empliciti, Revlimid, and dexa­meth­a­sone, I observed fatigue and low energy by mid-day. My hemoglobin, white blood counts, and platelet counts remain lower than I want, yet I feel all right. I avoid chil­dren with runny noses, wash my hands compulsively, and wipe gro­cery carts and door knobs with sanitizers. I don’t feel acutely ill as I did by the end of a Kyprolis cycle. I also ap­pre­ci­ate the tran­si­tion to a monthly schedule for the Empliciti in­fusion.

I’m hoping that this treat­ment regi­men con­tinues to be ef­fec­tive in my fight against mul­ti­ple myeloma, as side effects have been tol­er­able with a less neg­a­tive im­pact on my quality of life.

In Colorado, spring is com­ing in spurts of sunshine and snow. I am thankful to be alive.  If I begin to be less grateful to be alive, I refer back to the words of Maya Angelou:

My mis­sion in life is not to merely sur­vive, but to thrive: and to do so with some passion, some compassion, some humor and some style.