Hi! I'm writing this about a week out from my first round of chemo and immunotherapy. It was a doozy. ๐ตโ๐ซ
My regimen (TCHP) is two chemotherapy drugs (Taxotere and Carboplatin) and two immunotherapy drugs (Herceptin and Perjeta) because my cancer is Her2 + and those two immunotherapies target Her2 receptors.
My appointment was Monday morning (February 24th) at 8:15am, so that meant that I started fasting after dinner on Saturday night. Sunday I was hungry but it wasn't too bad honestly.
Francois also had to get the dry ice Sunday night, and get everything ready for cold capping and icing my hands and feet. I'm using Penguin cold caps because my infusion center doesn't have a cold capping system on site. This means a TON of work for Francois, but I think he was sort of happy to have something to focus on that was helpful.
Monday morning we arrived and got all set up in our little corner of the infusion room. Everyone was so nice and helpful and our nurse walked us through the plan for the day. The first round of immunotherapies they do what's called a 'loading dose' where you get more than usual, this meant that our infusion was about 90min longer than it will be the other times.
The infusions themselves went really well. I didn't have any strong reactions to the drugs and we were able to get them all done on time.
Look closely for the maxi pads protecting my skin from frostbite. ๐
Good look or no?
The cold capping was hard, no doubt, but not as bad as I thought it would be. It's really true that after the first 20 minutes or so you don't feel it as much anymore. It is a lot of work though. You have to change out the cap every 25 minutes, starting at least 30 minutes prior to the first drug that can cause hair loss and going 4.5 HOURS after the infusion is done. That meant we drove home with it on, and kept doing it for hours after we got home. That was when I was over it.
While at the infusion I wrapped myself in an electric blanket, had the heater on full blast on my chair, and had an extra quilt (donated by some amazing volunteers ๐ญ). I never felt cold, though I had to pull my hands and feet out of the ice sometimes because they hurt quite a bit.
The following week
Day 1 - Chemo day. I came home from chemo tired but restless, feeling just weird and exhausted. They give you steroids and anti-nausea drugs with your chemo so you just feel weird. I didn't sleep well that night but overall wasn't terrible.
Day 2 - I had to go back to the center to get a shot to help keep my white blood cell counts up. It felt so hard to leave the house! But overall I still had the drugs in my system and mostly just felt weird and really tired.
I also finally got to eat on the afternoon of Day 2, about 24 hours after the end of my infusion. I had some chicken soup to try to be gentle on my system and it was the best thing I'd ever tasted!
Day 3 - This was probably my worst day overall. I felt like every single cell in my body was depressed and not functioning. I also started to experience the diarrhea that would turn out to be my biggest issue.
Day 4 - I finally got a little better sleep, and I got in for a Mistletoe IV and some IV electrolytes. That helped me feel better, though I still felt the body-wide depression and fatigue.
Day 5 - I was starting to trend a bit better, and if my bowels had been functional I think I would have been doing really well. As it turns out, the Her2 medicines are known for causing diarrhea and I got double the usual dose this time, so it's no surprise that I struggled with that. It made it really hard to get strength and energy back, and very challenging to find an appetite for anything.
I also started to have taste bud changes around this time so nothing tastes right and it's very hard to get motivated to eat.
Day 6-8 - I'm holding steady now, the feeling of depression and fatigue is gone, I'm sleeping well, and staying hydrated. Unfortunately the bowel issues continue, which will be a big problem if my body can't get past them soon. I've lost weight and can't really be doing that every round. It is fairly common to have to drop one of the Her2 drugs because of this issue, so we will see how this next week goes and how treatment #2 goes.
Choices I made and things I learned at this stage
1) I am cold capping to prevent hair loss for two reasons. Firstly, 3 of the 4 drugs I'm getting cause hair loss, and one is known for permanent hair loss. Its one thing to lose your hair and grow it back, it's another thing to have thin hair for the rest of your life.
Secondly, I believe it would be more traumatic for both me and Daphne if I lose my hair during this process. Of course we will handle it if we have to, but if there's something I can do to try to prevent that, I will.
2) I am fasting 36 hours before, during, and 24 hours after chemotherapy. This is known to both protect your healthy cells (and therefore have fewer side effects) and encourage the cancer cells to uptake more of the cytotoxic drugs (because they're hungry little zombies).
3) I am icing my hands and feet to prevent neuropathy. Once again this is a side effect that can be permanent sometimes and is truly unbearable if you have it, so I'm willing to try anything that might help.
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