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My first Darzalex infusion: what it was like

by Pepperink on Fri May 25, 2018 2:59 pm

Yesterday I had my first Darzalex infusion. For anyone curious, here was my experience.

The first day, they take it real slow because everybody has a reaction. So I arrived at 8:00 a.m. and left at 5:00 p.m.. Next week they expect to take almost that long. After that, it takes about 5 ½ hours.

Here is the sequence:

All medications are given through an IV.

  1. Tylenol (acetaminophen / paracetamol) (to reduce and aches and fever).
  2. Saline “flush” (I don’t remember how often they did that).
  3. Benadryl (diphenhydramine) (to reduce allergic reaction).
  4. Dexamethasone (a steroid I’m already taking weekly in pill form). Has anti-myeloma and anti-inflammatory properties.
  5. Darzalex (the main event).
The Darzalex comes in a 1,000 milligram bag. The normal flow rate is 200 mg per hour, but they start out at 50 mg.

After an hour or two, the rate is increased to 100 mg. Some time after that I began to feel a constriction in my upper chest and it itched a little. I waited to say anything to see if it got better or worse, but it stayed the same, so I told the nurse. They immediately stopped the drip and connected me to a bag of Benadryl. The earlier bag had not affected me, but this second bag made me very drowsy. When my chest felt normal, they put me back on 100 mg. I never had any more reactions.

After a while, they boosted me to 150 mg, and later to 200 mg.

By 5:00 I still had about 100 mg of juice in the bag, but I elected to quit there and go home. It was a long day.

Today I feel really good. Some people (about 20%) get aches in their joints and/or a slight fever, which they treat with Tylenol. I have had no reactions, except last night when it took two hours to get to sleep, because of the dexamethasone.

Next week I expect a 200 mg rate, which means about 5.5 hours in the chair. I take a sandwich, munchies, and diet soda, as well as my tablet, a book, and my MP3 player. That all makes it bearable.

The worst part (minor) is that, with all the fluids dripping into me, I must make about four trips to the loo, dragging “R2D2” with me. No big deal, and it’s important to stand up and walk once in a while.

The plan is to have weekly drips for eight weeks, then every other week for 16 weeks, and once a month after that (which means I can make nice long trips!).

My first 10 months of treatment (Revlimid, Velcade, and dexamethasone) was not very successful due to my low WBC and a reaction to Revlimid. I'm very optimistic about Darzalex.

Pepperink
Name: Jimmie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 16, 2017
Age at diagnosis: 66

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