Anyone starting brand drug, Enhertu?

I just started Enhertu on Monday and it's going well. This is my third time fighting this beast. First was 18 yrs ago ER+PR+HER-, 8mm, lumpectomy, left breast, no nodes. Rads but no chemo. Second was 9 years ago ER+PR+HER-, 4cm, right breast, chemo then mastectomy, then rad, then AI for 5 yrs. Now it's a recurrence in my right side by where the lymph drain exited ?? ER+PR-HER+, 1cm, no nodes. Full plan not set yet, just phase 1.

I had the port placed on Monday at 8 then had chemo at 12. Tues went pretty well. Dealing with very mild nausea (am on lots of anti nauseas so I took Miralax on Mon as I didn't want constipation from these.) Also feeling really tired and foggy and no concentration. Wed I had chills and shakes in the AM but better as the day wore on.

Glad we are here to support each other, encourage each other, and give advice from our experiences. I sure got a lot of comfort from my 2017 journey with all the wonderful ladies who were on this site then. I know it will be the same now.

Prayers going up for everyone!

Thanks onlywhenitrains, I will try probiotics as I am sluggish too , I think from the antinauseas. Did you take any prebiotice like Metamucil and did they help?

Thurs I was so fatigued in the afternoon and the foggy brain was bad. I 've also gained 5 # from the steroid, but stopping it today. Been eating out too much also. Gotta drink more water!

It's great that you are NEAD for over a year! Prayers and Thanksgiving for that!

My last Breast MRI they saw a suspicious spot in my left breast almost in the same location as the right, by the drainage scar (hmmm), so going in for a biopsy this Wed. I'm grateful my team is quick to move on anything they find.

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This appears to be an old strand. But I thought I'd chime in anyway, as a newby. I have had remarkable success with Enhertu. I'm Er+ her2 -2 (low) previously just called negative. My MBC has taken up residency in my liver and the targeted approach has sent my liver numbers plummeting. My first go around was a single side mastectomy 4.5 yrs ago with radiation Tx. Was just re-diagnosed in June '26 with mBC with liver, adrenal gland involvement and a lump in a lymph node that was the discovery point. The side effects are a bit different than straight up chemo, so I'm navigating those and would like to know what others have gone through. I'm one week away from my 4th infusion. (Told you I was new. :-)

Hi @kam623 , welcome to our community! It’s great to hear that Enhertu has been working so well for you. We hope you’ll find others here who can share their experiences with the side effects and what has helped them manage them.

And to answer your question, NEAD means No Evidence of Active Disease.

Wishing you continued good results with Enhertu!

The Mods

@more_cowbell  - why did you stop the Phesgo? Did you have progression on it?

@kam623 - i have adrenal gland involvement too, which I've read is rare for breast cancer mets.. My SE's on Enhertu were brutal. I was given a dose reduction on my 5th infusion which did help. Ended up stopping it after 13 infusions due to stage 2 ILD and malnutrition from the stomach pain and nausea, but luckily, most of the tumors had disappeared by then except for the adrenal lesion.

So, I won't be getting SBRT afterall. I had an adrenal protocol MRI (in lieu of a biopsy) which came back as indeterminate for whether the adrenal mass is benign or not. My Onc. doesn't want to put me back on treatment so we'll be watching and waiting. If the adrenal mass grows, we'll treat it with the SBRT.

@kisbah06 Positive vibes to you! I asked my oncologist what I would try next if Enhertu stopped working and she did not offer a next step. She was more, "If this, then that." I'm going to go with your SEs will improve and that you will adjust along the way in order to live your life.

To GenPop. Prior to my 24th treatment, I had a problem with a blood clot at the end of my port and I was hospitalized for 7 days on a heparin drip. When they went in to get the clot (2nd TEE with atrial thrombectomy), they discovered it was gone! No need for thrombectomy! Much surprise all around. I guess no one thought the heparin drip would actually make it disappear. I eventually had my 24th through an IV and I was then cleared to use my port for 25. In the land of glasses half full and empty, I might not have had a blood clot unless I had a port, but I would never have known I had a blood clot unless I was getting regular echos because I was on Enhertu.

@kisbah06 It was determined that my cataracts developing so rapidly because I was on Dexamethazone. Stopping Dex would not have helped my cataract situation, but I started to wonder if I really needed them in the first place. With my oncologist's permission, I stopped taking the post-infusion pills and then later I stopped getting the infusion prior to my Enhertu dose. I still get the pre-Enhertu nausea meds. Apparently, it's not a thing to stop getting those. Also in the land of glasses half full and empty, I wouldn't have needed cataract surgery so soon if I wasn't on the Dex, but now I have 20/20 vision! My main SE early on was fatigue, but that decreased to nothing after a while. I hope the same happens with your fog and dizziness.

I recently read an article about how Enhertu has been approved for early stage BC. https://www.bcrf.org/blog/fda-approves-enhertu-for-early-stage-breast-cancer/ Because I'm Stage 4, I need to be on Enhertu as long as I can. Do you have a sense of whether you can stop if you get certain scan results?