Any stage IV's stop Enhertu after going into remission?

chocomousse

Has anyone who reached NED while on Enhertu but had to stop due to side effects, gone on to achieve lasting remission (1+ years) or did your cancer return soon after?

moderators

Hi @chocomousse! It really can depend on things like subtype, where the metastases were, and what treatment someone went on to afterward. 💗 That’s why you’ll probably hear very different experiences from different people here.

Someone with HER2+ bone-only disease who transitioned to another HER2-targeted or maintenance treatment may have a very different path than someone whose cancer had spread to organs like the liver, lungs, or brain, or someone with fewer treatment options after stopping Enhertu. The reason for stopping matters too.

At the same time, reaching NED on Enhertu is still a very hopeful sign. It means the cancer responded deeply to treatment, and for some people that can translate into long periods of stability even after they have to stop the drug.

I hope others who’ve walked this road will share their experiences with you. The uncertainty is so hard, and you’re not alone in wondering about this. 💕

What side effects are you experiencing?

chocomousse

"At the same time, reaching NED on Enhertu is still a very hopeful sign. It means the cancer responded deeply to treatment, and for some people that can translate into long periods of stability even after they have to stop the drug."

@moderators Thank you. Can you post links to additional data regarding PFS after NED in Stage 4 patients on Enhertu and Perjeta who discontinue early?

Based on my research, a lot of biological factors worked in my favor like having only 4 met sites (Oligometastatic), this being my first line of treatment and having grade 3 cancer with a KI-67 rate of 80% which means my cancer was highly HER2 addicted and aggressive which is the type that ADC's like Enhertu have the most success with. And although I reached NED after 11 infusions, I stopped treatment after 13 infusions and I've read that the sooner treatment is discontinued even after NED, the sooner the relapse.