It’s been 10 days since my previous update, so it seemed like a good time for another. I’m mostly feeling okay today and have been for a few days. But it was rough going there for a bit.
Side Effects
For the first week or so, I had a bunch of side effects. I felt largely non-functional and spent most of my time sleeping or trying to manage the side effects. My side effects were made more complex because I increased the dosage of my low-dose naltrexone (LDN, which I take for ME/CFS) just before chemo started, so I had to contend with those side effects (like extra fatigue and even more vivid dreams than usual) on top of the chemo side effects. I learned my lesson and will not be doing that in the future.
Here are my major side effects:
- Blurry eyes
- Bone pain
- Brain fog (more than usual)
- Breaking out (papulopustular eruption)
- Constipation (from antiemetic medication)
- Fatigue (more than usual)
- Floating sensation (feeling out of my head and body)
- Headache
- Heartburn
- Loss of appetite
- Muscle fatigue (more than usual)
- Nightmares (worse than usual)
- Reduced sense of taste
- Vomiting
The bone pain was particularly bad. The Nyvepria shot (which is a biosimilar to the more well known Neulasta) is administered to increase the production of white blood cells, which help keep me safe from infection. However, they increase production so much, there’s not enough room for them all within the bones, which causes bone pain. I am taking Claritin to minimize the bone pain but it was still pretty bad. At times, it felt like each vertebrae in my spine was pushing apart and it hurt all the way from my neck down through my hips and thighs. I didn’t really find anything to help it, though I tried taking Tylenol, as recommended by my oncology nurses. Lying down fully was the only thing that seemed to help at all, so I did that often.
I only vomited once. Unfortunately, it was in the morning, soon after I took my morning medications (which is most of them) on an empty stomach. There was no way to tell which medications remained inside me long enough to do their stuff, so my medications were just messed up that day. After that morning, I developed a routine:
- Wake up
- Take Zofran (ondansetron) and wait at least 30 minutes for it to activate
- Eat oatmeal and wait at least 30 minutes to see if it stays down
- Take morning meds
Easing into putting things in my belly in the morning seemed to be an effective strategy for keeping everything down. I didn’t experience much proper nausea, except for right before I threw up. It was more like my belly felt gross and food seemed unappealing and I was worried about throwing up again.
Chemo Checkup
On day 9, I went into the medical oncologist’s office for a checkup. They took my height and weight and also drew some blood. I was a little disappointed to discover they wouldn’t use my port for the blood draw. Apparently they only use it to draw blood on days you’re getting chemo infusions. They ended up having to fish around in both arms before they managed to hook into a vein successfully 😬, so using the port would have been preferable in my opinion.
I met with the oncologist’s nurse practitioner (NP), who asked me what side effects I’d been having. Luckily, I had been keeping a list for just such an occasion, so I was able to convey most of them to her. She did give me some helpful recommendations, like taking Prilosec OTC on top of all the other things I’m taking for heartburn. I wasn’t sure what else I could take while struggling with the heartburn, since I already take Pepcid twice a day for presumed Mast Cell Activation Syndrome (MCAS). Speaking of which, she mentioned that the MCAS might make the bone pain worse, since the bone pain is essentially an inflammatory reaction. She also said that they can give stronger meds for the bone pain, but they might not play nicely with my anti-anxiety meds, so it sounds like I won’t be getting any of those.
Day 9 was the first day I really started to feel better and the NP felt like that was right on schedule. She said I should continue to improve now until the next round. One of my friends who has had breast cancer told me chemo would be like a roller coaster. The first several days after chemo are the lowest point of the coaster, but then you start to feel better until you do it all over again. And I am finding that to be true.
Before the end of the appointment, the NP reviewed my blood work with me. She was extremely pleased with the state of my white blood cell count. The normal range is 4.8-10.8. Mine was 46.91. My husband said, “That’s my overachiever!” 😆 And so, I guess the bone pain was worthwhile in that it meant my body was making a ton of white blood cells. She mentioned that the chemo has made me a bit anemic, but otherwise I’m in good shape. We were supposed to have another checkup this week, but the NP was so pleased with the state of me, she let us cancel the second checkup!
Port
My port is pretty well healed up now! All the swelling has gone down, so I thought I’d share another photo.
Work
I was able to work a little bit this past week! It felt like a lot, but that’s just because I don’t have much energy. It was only about 7.5 hours total. But, you know, that’s better than none! And I should be able to do some work this coming week, as well.
Up Next: Chemo, Round 2
Round 2 of chemotherapy is December 3. I’m pleased about the timing because I should be feeling better in time for my birthday in mid-December. 😁 Not that I’ll be doing anything out in the world to celebrate it, but at least I won’t feel like hot trash on my birthday!