Remicade: So Far so Good

October 23, 2008

Today’s infusion of Remicade–my first–is all done with now. I was a bit antsy having to have this done at the Cancer Center at St. Vincent’s (I am quite sensitive to the discomfort and suffering of others; I was worried that the distress of those who are much worse off than I would make me feel terrible), but I ended up getting my own private room. This might be because I had a late afternoon appointment.

After paperwork, I was led back into the infusion/chemotherapy center. The layout involves a few communal rooms (about four chairs or beds per) looking out at a Zen-ish courtyard with fountains and bamboo, as well as several private rooms (really like examining rooms with outsized, industrial recliners).

I scored a private room. After some hemming and hawing and in-and-outing, my nurse got my IV line started. This hurt a bit worse than I remember: I’ve been getting spoiled by the relatively painless pricks of my constant blood work. It wasn’t the initial stab and surprise that sucked; it was that it was uncomfortable most of the time I was there (hours). Every few seconds there would be a small, pinching pain in my arm that felt like, well, being stabbed with a needle. I’ve probably had a dozen IVs in the past year, and each is different. Really, I’m overblowing this. It wasn’t too bad.

Next, I was dosed with a chunk of Benadryl (to reduce the potential of an extreme allergic reaction) and acetaminophen (I’m not sure why). Then there was waiting. After a while they hooked up the Remicade juice to a pump and started giving it to my slowly, to make sure I wasn’t going to die or anything. I reclined and read and David was able to get some work done (there was wifi). My overall infusion took longer than it will in the future because of the initial caution. Finally they amped me up to something like 200ml an hour and stuffed the goop into my veins faster.

The Benadryl made me sleepy but not as zonked as I expected. I drowsed a few times but never plonked off completely. The minor frustration was that I was alert enough to be bored but not quite together enough to read. Granted, I am reading Middlemarch right now, which isn’t exactly pop fiction. And I just couldn’t stomach watching TV, though each patient is kindly supplied with their own boob tube and controls.

The nurses were very kind. I suppose compassion is very required in their line of work, and I’m sure many on the staff assumed I was stricken with something worse than I actually am. Let me take a moment to thank the lucky stars joy super awesome that I only have Crohn’s and not cancer. Believe me, I know I could have it way worse off.

We drove home (well, David drove) in a beautiful, if slightly icy, twilight and far less attractive traffic. I napped for a couple of hours. The only side effect I can report now is a persistent muscle pain between my shoulder blades, which could be entirely unrelated.

Several of the nurses commented about how “wonderful” of a drug Remicade is. I hope they are right. Better that than the side effect that sometimes happens: an “aggressive” lymphoma that is usually “fatal.” Gulp.


  1. Aaron says:

    I’m glad to hear that things went smoothly. I hope Remicade works out for you overall.

    Sick sucks.

  2. Todd says:

    Also glad to hear things went well. Can I just point out that, according to Wikipedia, Remicade’s chemical formula is C6428H9912N1694O1987S46.

    I mean, wow. I realize it acts at the biological level, if you will, not the chemical. But still. That is huge!

  3. Todd says:

    Hmm. My attempts at subscripts didn’t work. Oh well.

  4. Mom says:

    This was similar to my experience in the Retuximab. I found that cheezy crossword puzzle mags and the occasional round of knitting were about all I was up to. Computer Solitaire, that sort of thing. If your IV was uncomfortable, they could have moved it. I had some in my forearm rather than my hand, and they were pretty easy to take. Plus the nurses gave everyone a hot pad to make the arm more cozy. I’d sometime put it on my abdomen and sink blissfully into reverie.

  5. Mom says:

    I meant Retuximab TRIAL. Eight infusions over two years, and it had no effect on primary progressive MS. I did come out of it with a nice dark red fleece throw from Genentech. Evidently this product is also mouse pieces (human and mouse antibodies). Douglas Adams may have been right in Thanks for All the Fish. Mice rule.

  6. Hillary says:

    I hope you get better soon!

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