Enhertu treatment and quality of life

Hi … thank you. My fatigue is of the debilitating type. I can barely get out of bed and I have neuropathy in my legs due to the last treatment. I’ve had to hire a dog walker, really for the last year. Since the first dose of ENHERTU 8 days ago, I go in and out of sleep sort of like narcolepsy all day long. I am not able to do any activities except walk a short distance to my kitchen to get food that I’ve had delivered. Prior to this first dose I did not feel all that bad. In fact I went out to eat twice with my brother and went to a cookout at my cousin’s all within a span of a few days. Then I had the dose and wham I turned into a sick weak debilitated person I do not recognize or know.

Have you spoken with your oncologist? She/he may have to reduce the dose you're getting. I wouldn't wait to contact her/him. Really.

I took the advice of this group and consulted my oncologist on how sick I am on ENHERTU. He wants to try a dose reduction next time. Has anyone found this to be helpful? Thank you.

It should be helpful, although I'm taking the full dose. I'm glad you talked to your oncologist!

@margitdill I’m in a similar diagnosis, also with limited treatment options and feeling unhappy about my quality of life on ENHERTU. I get my 1st CT tomorrow after 3 rounds on it. You’re not alone in your side effects and questions about what’s next if not ENHERTU.

Thank you for sharing this. I think I’ve 6 rounds of ENHERTU now … the last 2 were reduced doses. It was by far the worst chemo drug I’ve had. I thought TIVDAK was bad … ENHERTU was worse. They’ve scheduled my next reduced dose on Dec 22. Probably have another scan then. My doc has an off label drug he thinks will be good for me. I will get the name of it and post it. With this last reduced dose, there were fewer side effects. But ENHERTU was still rough on my bladder and its function.

@bonham27 Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. If I figured this correctly then you are getting the CT today (Dec. 8). Is that correct? Will you talk with your oncologist after the CT so they will know (if they don't already) how your quality of life is on ENHERTU?

@margitdill Are you feeling any better on the reduced dose of ENHERTU? We will be interested to know what your oncologist tells you about the off label med he thinks will be good for you.

I would say there was a little less fatigue. No blacking out like I did with the dose prior to this one. But the effect of giving me an overactive bladder was still fierce. That was 8 days ago that I had chemo and still waiting for the bladder issues to resolve. Yes, I will share the off label drug he is thinking of. My next ENHERTU is Dec 22, not exactly sure what is planned after that. But I will share especially if it helps others.

@margitdill I also am on ENHERTU-going on 14 cycles now. Bladder issues here too. And bowel issues. Glad the fatigue has lessened. Hang in there!