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Home » Immunotherapies (IL-2, IL-15, PD-1s, etc.) » Life at NIH: Side effects are manageable, daytime TV is not

Life at NIH: Side effects are manageable, daytime TV is not

Posted by on April 30, 2012 in Immunotherapies (IL-2, IL-15, PD-1s, etc.), My Health Updates, Other Drugs - 9 Comments
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We are about a week into the treatment, with a little more than a week to go, and there have been no fireworks. I have not passed out once. No kidney failure, no hallucinations. Not even some crazy heart rates. IL-15 is definitely not IL-2.

My temperature has idled low at about 95.7 in the mornings and then creeps up a bit in the afternoon.  My blood pressure similarly starts out low but does pick up some in the afternoon. My platelet count dropped enough to cause some mild anxiety among the oncology team, but it has been climbing slowly but surely for the past few days. There has been some mild capillary leakage. My red blood counts are a little low, phosphate a little high.  Nothing to get too worked up about.

In terms of side effects, I haven’t faced anything severe. I get an infusion each morning at 10 a.m. via PICC line. This takes about half an hour. Two to three hours later I start to feel the effects in the form of some flu-like symptoms – muscle aches in the shoulders, pretty grinding headache, fatigue, loss of appetite and an exacerbated cough.  Some folks get chills, even rigors, but I have not.

Such is my routine each day. And, after a week in the hospital, this routine has begun to wear a little. Although I am not fighting side effects all day long, I don’t have as much free time as I thought I might. I had visions of reading, writing, winning high-stakes Yahtzee competitions, maybe even a little Salsa dancing.  Because this is a clinical trial, however, I am under constant surveillance, with continuous interruptions. For example, nurses check vitals (blood pressure, heart rate, temperature, etc.) every fifteen minutes for the first hour after the infusion and continue at a gradually lessening pace through the day. This takes up the first half of the day. The second half of the day, when some time is freed up, is dampened by the side effects. You hate to complain, but after a few days of this routine you enter an einsteinian time zone in which hours and minutes become confused, days become an abstract concept, and daytime TV grows mythic. What the hell happened to Regis, anyway? Where did he go?

I do not think I would make a good prison inmate. First, I don’t like getting raped. Second, I don’t want any more tattoos. Third, I have come to realize that I don’t do well cooped up in the same room for more than a week. Luckily, my mother has come up from Savannah and has hung out with me for the entire time and provided company. Less lucky, she has gotten some new tattoos and has begun referring to me as her bitch.

  • Mick and Sue

    Chris Battle…..you are…irreverent!! Talking about your sweet mother that way!! Josie is enjoying TV for you! You need to try Bubble Guppies or some Scoobydoo Doos!! Hang in there….we are praying this is the magic bullet! Everything is great with the girls!

    • Chris Battle

      Just so everybody knows, my mom was sitting right next to me when I wrote the post. She thought it was funny. Plus, I think she really does want to get some tattoos :)

  • Frankfriedman8311

    Chris: You are a very brave person. Dena can tell you anything worthwhile from my daily commentaries. I wish you the very best.  If the girls want anymore cards tell Dena and I will mail some.  Praying for you everyday.  Prof. Frank Friedman,Flint,Mi.  “Kidney Cancer Support Group of Michigan” facebook group.

    • Chris Battle

      Frank, can you share the link for your daily commentaries?

  • Jplantin

    Now you know why the previous patient in your bed watched porn.

  • Bonnie

    Chris, I think I know what happened to Regis.  Kelly killed him ’cause she wanted his job …………….. ;)

  • Pwdekemper

    You have a great attitude.  I am glad to hear that it is more bearable than IL-2 -  because it sucked!

    Be strong.  My prayers are with you.

  • Sharon scheidhauer

    I know, about Regis. I spent four maternity leaves with him. But no worries because Kathie Lee has made a comeback on another morning show.
    Glad to hear everything is going smoothly at NIH. My very good friend is the Director of Communications at their Infectious Diseases Institute. Some acronym I can’t remember. They’re trying to cure AIDS. If cancer were infectious, I’d have a person on the inside for you. I did share your last posting about the porn. She laughed then said something about an internal investigation or some such nonsense.  Anyway, if Dena has questions about NIH while she’s pursuing her google medical degree, let me know, and I’ll put you guys in contact with her.
    Sending Florida sunshine and some Disney magic your way….
    sharon

  • Bobbejo46

    Ahhhh Chris, what mothers won’t go through for their sons!!!

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