Enhertu treatment and quality of life

Hi, I was on Enhertu for 13 infusions. My tumors were stable and even shrunk some. I found it much better than Doxie and Carbo. The first days were fine because of the steroids. Day 4-6 or 7 nausea and fatigue but I was out walking and driving, By around day 11-12 I was playing pickleball My doctor had wanted to give me a rest after 6 months but I requested to go on another 3 months. I then had a bit of a lung condition known as ground glass...look it up, not really glass;-) I am on a chemo holiday right now and going to try Everolimus in two weeks hoping for as good a result as Enhertu. If it doesn't I may go back on Enhertu but a lower dose. The very best to you. Hugs!

Thank you:)

Yes that is the protocol explained to me. I had my first treatment yesterday. Supposedly the first dose is a little higher. Despite a steroid being part of the drip, I fell asleep in the infusion chair and have been wiped out with fatigue and drowsiness 24 hours later. Similar experience, anyone? Thank you.

No. I don't think they put steroids in the drip. But, I do get fatigued a few days after the infusion. Nausea is also part of the equation. You'll feel better after the first weeks after the infusion.

Thank you … good to know about the fatigue, because I feel wiped out still. I read the list of additions they put in the drip and a steroid was one of them. I asked the infusion nurse; she confirmed that it was a steroid.

The important question is how it affects YOUR quality of life and if the side effects are worth the benefits for you. Different people react differently.

From what you've said before, it seems like Enhertu is working on your cancer. Statistically, LenPem may work just as well on the total population, but it may or may not work for you. And the side effects may be better or worse.

If it were me, I'd stick with the Enhertu until it stopped working, unless I felt that the quality of life was unacceptable. Better the devil you know.

I haven't taken Enhertu, but I was on a clinical trial of a copycat drug. (It didn't work for me.). Before every infusion they gave me the anti-nausea drug Aloxi and the steroid dexamethasone.

I didn't really feel bad at all, but I wonder if feeling bad might be a sign that it's working. The one clinical trial I have been on that worked on my cancer made me feel awful. And as it stopped working, I started to feel better.

Thank you for the feedback on ENHERTU. It is the fifth cancer drug I’ve been given - and for me, the one with the worst side effects. I have not recovered from the first dose … the fatigue, the nausea, the flu-ish feeling have made me bed bound. For me it is unendurable. And I have no quality of life. I think my body is now resisting and rejecting cancer drugs. I am thinking about ceasing treatment soon.

Ask your oncologist.

How long has it been since your first treatment that you're still feeling sick? As I said before be prepared to be sick to your stomach and GI problems. Take the prescribed anti-nausea meds, metacoplomide (sp?), every 4-6 hours with food. I also take a prescribed med to combat acid-reflux, pantoprazole, which I take once a day before I eat breakfast; but you can take another if acid reflux continues.
Fatigue is an ongoing issue; I sleep in the afternoons the first week after treatment. It's hard to resist the bed but I find that if I do, get out in the garden or walk around the house, doing some laundry or walking the dog, I feel a little more energized.
Enhertu may or may not be for you. But your oncologist should be monitoring you closely. Keep him/her informed if you don't get the attention and relief you deserve. Don't give up!