As you remember, I’ve moved from my regimen of Herceptin and Perjeta coupled with Navelbine to TDM-1 or Kadcyla. I’m on round three. It’s given as a single infusion every three weeks. Here’s how it’s going.
- Much less heartburn
- GI is manageable
- Food tastes mostly fine
- Week 3 is almost sort of normal-ish
- It’s nice to not have to be in the infusion chair so frequently
- I run fevers for about two weeks; I think the fevers are getting worse. I have to use acetaminophen or NSAIDs and really stay on top of dosing.
- Coupled with the fever, I feel that long bone pain I’ve written of in the past. I have this pain (it feels like you do when you come down with the flu) every time I develop the fever. It’s how I know it’s time to take some meds.
- I have low energy throughout the cycle, compared to my old self. It’s especially strong during the feverish part of the cycle. That means frequent naps, exhaustion from minor activities (like a trip to the bathroom), etc. It does seem a bit worse than the previous regimen. I am more “disabled.”
- I may not be making progress, at least with the soft tissue. My antigens are up significantly, not a good sign.
- Because I don’t feel that well, nearly everything I do is impacted.
The Post-Infusion Camping Trip
A dear friend wanted to spend her milestone birthday with me, so we arranged to go camping; she was hoping that we could just sort of travel and boondock, but it was Fourth of July weekend. We wisely made reservations. Of course, infusion day was the day before; nothing I could do. But we have an RV with all the comforts of home, although it is exhausting to pack – we managed to do it. We left for camp right from my infusion. It went ok that night; this was only round two so I wasn’t sure what the pattern would be. We were ready for the worst.
As time went on, the more difficult it became to reconcile the different energy levels. By the end of five days, I was ready to just be in bed, so instead of wandering with them, we headed home. (We had had a technical difficulty as well; wandering probably wasn’t a wise choice at that point.) That illness kept up for another week or so. I am just not up to much of anything when I feel like this...and this is becoming the majority of the cycle. Plus, it seems to be getting worse.
So much so that I thought that a strange lymphedema that I developed – it honestly looked like my breast was growing back – looked worrisome. I ventured downtown to see my doctor, and she sent me to the surgeon. Yeay! Another surgical procedure on my very favorite spot! (Yes, that is sarcasm.) It was mostly good news: a seroma (basically a large clot of congealed blood) not infected, no cancer seen. And eliminating it means that suddenly I am breathing better. I had no idea that that was an impairment to breathing. But once again, I’m tending an open wound to my chest wall. Gah!
That means I’ll be tending it while I’m on my European trip. Yes, Europe! In an expression of major financial and possibly medical irresponsibility, I’m going to take a river cruise. (But my doctor approves; it’s ok!) You’ll read more about it in my other blog, www.sunstarlandings.com. That type of cruise made sense to me when I arranged it many months ago; I’ll finally get to see all of those things I had not been able to since high school, the things that poverty followed by parenthood and middle class life denied me. Even if I'm not well, I can see windmills, vineyards, Deutsches Eck and Lorelei from my veranda.
The cruise is scheduled for week three. See how that works? But even if I’m not that well, I’m well enough to try. I’m going dammit! Then I’ll get the CT scan, the bad news and the plan for the next thing. I’m sure there will be something. There’s always something.
Feel free to share your thoughts and feelings below.