Anyone else on Enhertu? What's your experience? How long?

Ask your doctor if they can give aprepitant or fosaprepitant prior to chemo. They are anti-nausea drugs that last for 3 days.

Hope it works for you. My wife has been fighting OV for over 4 years. Get multiple 2nd opinions and get to a specialty Cancer Center early on in your journey.

Make sure your team is in it to Win for you and your lead Oncologist is your greatest advocate for whatever it takes.

Best of success in your journey.

Hi, I have been on Enhertu since October, 2023. I am 75 and have recurrent ovarian cancer. Diagnosed in 2019, the usual treatment and surgery, NED until Oct. 2022 then 6 rounds of liposomal doxorubicin and carboplatin. After taking a chemo holiday and the tumor in my pelvic area growing, I applied for a grant for Enhertu. The drug was granted through the drug company. What I found is that the SE do get better and I have about 10 days where I can function normally. I have to be careful what I eat the first week or so. Small balance meals, nothing artificial. Not too much food at first or I get the feeling of being too full. Stamina comes back to the point where I can play pickleball around day 10-12. If you are a FB member, there is a group for Enhertu on FB. People report varying SE but it might help. So hope this works for you and you get some periods of normalcy. The best to you.

Anyone else on Enhertu and wondering what's next?I'm stage IV serous endometrial. Went through chemo and surgery last year and was NED for 6 months and just on herceptin maintenance. Cancer came back and I've been on Enhertu since June (6 cycles). Just about NED, CA125 down to 8. I know Enhertu is new treatment for gynecologic cancers but I'm wondering if anyone out there has been on it and then was able to quit without recurrence? Or am I on this stuff forever?

@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?

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.

Thank you Thank you. This is super helpful! I've just been wondering whether there is an end point or I'm just getting infusions every 21 days forever! I'm in month four (after a year on Herceptin) of Enhertu. It's working, which is great, but at some point, like you, I'd like to be done with the infusion sessions. I don't know how many people with Endometrial have been on Enerhutu given that it was newly approved for cancers other than breast cancer. Nausea and fatigue day 3 - 10 but that's it. I'll be real interested to hear how it goes with Everolimus. Please let me know if you think of it. Good luck!! Ground glass in your lungs?!!!! That sounds really frightening.