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@colleenyoung

@earnoldnpr, good question about Enhertu and wondering what might be next or if you'll be taking it as a maintenance treatment long term. I moved your question to the earlier discussion you started to stay connected with other members like @charlotte12 @mommacandy @naturegirl5 @pissedoffmark @lathomasmd @westonan, who have experience with Enhertu.

@earnoldnpr, it sounds like Enhertu (fam-trastuzumab deruxtecan-nxki) has been effective for your cancer. I know the side effects were challenging, at least after the first round. Has your team suggested that you could stay on Enhertu long-term as a maintenance treatment? Have the side effects become manageable or are they affecting quality of life too much?

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Replies to "@earnoldnpr, good question about Enhertu and wondering what might be next or if you'll be taking..."

I received Bevacizumab, other names: Avastin, Zirabev, Alymsys, MVASI- with my chemotherapy, I have no experience with Enhertu.

Yes, Enhertu has been working for sure. Weirdly, side effects seem to be less each cycle and are pretty tolerable ( nausea and mostly fatigue days 6-12 and hair loss of course) I know there’s not much evidence out there yet as this is a new treatment for this typecancer but I wonder if after a certain period of time with NED anyone has successfully stopped infusions. My oncologist says I need to be on it “ until it stops working or it is causing other problems.”

i have no experience with enhertu...my pre chemo included zofran and dexamethasone and then dexamethasone (for 3 days), zofran and compazine after.. taxol/carboplatin was my chemo...

I had a good result with Enhertu. My tumors got smaller and I believe one went away. My doctor was going to keep me on for 6 months but I elected for another 3 months, so 9 months total. What I liked about it was that it was predictable. I was able to play pickleball by about day 12, took walks everyday, though I was tired before about day 10 or so. After my last infusion I thought maybe I had a cold, but it ended up being ground glass in my lungs. I was planning on stopping for a bit of a break so needless to say, I did. I am now on a, "chemo holiday". The main thing I did not like about Enhertu was that I had to have an infusion every three weeks and I live far from Mayo clinic so that has been a challenge. My insurance just decided to approve Everolimus, which comes in pill form. I will begin this treatment after my next scans in two weeks. Some people report terrible side effects from Everolimus while others say it isn't so bad. I am hoping Everolimus works for me if not I may go back on Enhertu but at a lower dose. Also, for certain days on Enhertu I felt nauseous but taking Ordansetron worked for me. Hope this helps.