2nd infusion follow up

[Warrior77]

As promised, I'm checking in after my second Enhertu infusion. Since I knew what to expect, I focused on mitigating the side effects I knew were going to arise. For me, my side effect of choice seems to be indigestion. I don't get nausea, so I don't worry about that. I need to stave off the indigestion and the burn that comes with it. My side effects schedule this time was:

Day 1 - infusion (Wednesday) I take it easy the rest of the day and don't do anything strenuous.

Day 2-3 - completely fine, activities as usual. Ate normally, but meat was a turn off. Exercised normally.

Day 4 (Saturday) - mid-day, I crashed. One minute I'm moving around like nothing is going on and then the next minute I'm exhausted.

Day 5 - 12 - Tired, staving off indigestion, no longer walking my usual 2-3 miles outside. Forcing myself to do 20 minutes of slow pedaling on my spin bike. Some days, not even that. Definitely no driving or going to the grocery store. Felt like all the walking around in the store would be too much. Appetite is meager and got full after only a few bites of food. I tend to lose 3-4 lbs during this period and then gain it back after the bounce back.

Day 13 and after - as sudden as the crash, the bounce back occurred the following Saturday. No fatigue, strong appetite, walked 3 miles. Everything went back to normal.

It was an odd 10 days, but honestly, I'll take it. The two days of solid naps the first round didn't happen again. I was tired, but more of a sit-and-watch-tv fatigue than needing to sleep. I did sleep longer at night. I found the indigestion medication they gave me didn't really work, so this time I drank watered down lemonade all day and that seemed to keep the indigestion at bay. I use Simply Lemonade. Not a lot of ingredients and its tasty. A glass of water with a splash of that in it and it was enough to neutralize the stomach acid for me. I tend to hydrate all day, so this was ongoing all day, every day, all week. If the indigestion kicked in after a meal, I just chewed on an over-the-counter indigestion tablet and it knocked out the burn.

I'm a big proponent of exercise to keep things in check. It helps me with fatigue, helps with the indigestion, and helps with my mental attitude. The hardest part of my crash week is not being able to really exercise, so by the end I get a little maudlin. I am pretty good at counting my blessings, though. I have roughly one crap week and two good weeks on Enhertu, so I consider myself blessed. For my next infusion, I'm going to speak with my oncologist about lowering the steroids in the pre-meds to see if I can ease the crash.

Wishing you all good days that outweigh the bad. 🫶

[Justme153]

Thanks so much for the update. I feel it helps knowing what others experience on the different treatments. Even though we all react differently it gives an idea of what could or might happen and how others have delt with those issues.

[Felicia1228]

Thanks for the update! Glad you are hanging in there!

[Cowgirl1951]

Thanks for sharing your experience. Continue being positive.

[Figletf]

Yep,one bad week but then two good weeks....then westart it all over again😊

[Nocillo]

Thank you for the update. I’m still on pills, but lots of fatigue and going to the grocery store isn’t in the cards most days. Food rarely sounds good. I do the lemonade thing too. Watered down for sure. It’s nice to know others are feeling the same things. Hang in there everyone!!

[13plus]

This is great that you are sharing your reaction to this drug, thank you! I might be taking this med 2 switches down the line too. So it doesn't sound like it's 'too' bad, that's good to hear. Your comment "more of a sit-and-watch-tv fatigue than needing to sleep", I seem to get that quite a bit these days on the Xeloda, otherwise all good. And I'm like you, I like to keep up my exercise so that's my struggle, to accept those days when I really don't have the energy to do all I want to do, especially the stuff I do NOT like to do like admin/paperwork stuff 😂 It does get frustrating when my intentions are really good but the body/brain don't want to co-operate! Keep us posted how you go, best to you with it