Ipilimumab, Number 3

So last Friday I went in for a tediously long day of appointments and treatment. I started with a routine follow-up with my oncologist. She’s really focused on watching me for any signs of toxicity and we carefully review everything every week. I had a slight headache, but we chalked it up to minor dehydration. My achy neck and shoulders are a side effect from my bone regeneration treatment (my bad: I still don’t know what the heck the medicine is called, but I get an infusion every four weeks, for a total of nine infusions). No red eyes. No gastrointestinal distress. Still the same rash with no itchiness. I thought I was going to get a stern lecture because I forgot to take my meds one day, but I guess the pain I felt was sufficient punishment.

A little aside: my office just moved to a different town, changing my commute from 24 minutes door-to-door to somewhere between one to two hours door-to-door. And if I leave the house after 5:30, the commute is closer to the two hour mark. Well, in my rush to get out the door, I forgot my meds. Since I’ve been weaning off the meds, I thought things might not be so bad, and I was right for most of the day. I felt pretty achy and uncomfortable, but there was no pain. Until about 4:00. And there was the pain! While I was in the middle of the 90 minute trip home. Starting at the top: headache, stiff neck so looking to change lanes was torture, back pain, bone pain – I had it all! As soon as I got home, I took my next scheduled dose of meds, as well as short-term pain meds. Evidently, I did the right thing. Still, it took about three days to fully recover from my little oversight.

Emotionally, I consider it a major setback because I thought I was doing so well and the pain was virtually gone. Well, without the muscle relaxant and OxyContin, there’s still a pretty decent amount of residual pain. How long will I need to mitigate pain with drugs? I just want to feel normal, whatever that means.

So back to the appointments. One of the things we talked about was the need to get me into physical therapy. Essentially, I’ve done no physical activity for over a year and my biggest concern is I try to do too much too soon and end up doing significant damage to myself. I want to meet with a professional who can get me on the right path to recovery. I just need a voice of reason to prevent me from deciding to toss another 50 pounds on the bench press because I know what I’m doing.

After we finished, I headed in for my infusion. I love my nurse, but she’s not really doing well with my veins. I don’t like her sticking skills at all. A couple pushes and pulls and I’m truly surprised I don’t have a bruise yet. My lovely wife left in the middle of the infusion because she had to get to a parent-teacher conference. This was my third dose of ipilimumab, so I’m expecting to see side effects soon. I don’t want side effects, but evidently having side effects is a sign the medicine has saturated my system and is doing something. Otherwise, the infusion was relatively quick and boring.

Then, for my final trick, I had a follow-up with my radiation oncologist. He’s happy with my progress and is pleased with how much better I feel. Quick and easy!

The next steps for me are my fourth and final ipilimumab dose, my second bone strengthener dose, another brain and spine MRI (a joyous two and a half hours in the tube), another PET scan and more bone strengthener, oh, and physical therapy.

IIt’s all good.

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