Anyone else on Enhertu? What's your experience? How long?
Hi. 64 year old with stage IV serous endometrial. A year out after many rounds of chemo (carbo, taxol, herceptin) and major surgery, was NED for 6 months. New tumor now pushing against duadenum and some other nodules showing up. Started on Enhertu a week ago and am just flattened with nausea and no energy. Worried I can’t keep this up for many rounds? Taking zofram.. not much help.
Does it get easier? Harder? Drugs that help? Looking for any and all advice as staying active is my coping mechanism. Thanks to all in advance.
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
Connect

Honestly, the ground glass wasn't bad. It can be caused by Enhertu, not that unusual and it does clear up. I took some prednisone for a short while, although it can clear up on its own once you stop Enhertu. That being said, always be aware of your lungs while on Enhertu, it can cause issues (like anything else we have all been on). So hope you have a great result with Enhertu as there are a percentage of women that have excellent results. Will be sure to give this group a report back on Everolimus early next year. Hugs to you and everyone!
-
Like -
Helpful -
Hug
2 ReactionsHi,
I also have stage IV serous endometrial cancer. It was initially stage IIIC1 until it spread to my lymph nodes. I am waiting to see if I qualify for participating in a clinical study using Enhertu. Apparently my tumor isn't big enough yet.
Anyhow, in anticipation of joining the study I've been doing a bit of research on the drug. Among the reports I came across this one written in plan English. You may have already read this but in case not, see https://www.healthline.com/health/drugs/enhertu-side-effects
I wish I could tell you more but have yet to experience the treatment.
-
Like -
Helpful -
Hug
2 ReactionsI just wanted to expand on "grounds glass". I had to look this up, since I envisioned bits of glass in the lungs. The term doesn't mean that. In fact the term is "ground glass opacity" and refers to the patterns of fluid or mucous or inflammation that shows up on a chest CT scan. When I read this I was relieved. To read the report see here. https://www.medicalnewstoday.com/articles/ground-glass-opacity
If you scroll down you''ll find information on interstitial lung disease.
-
Like -
Helpful -
Hug
2 ReactionsHi there,
I have stage 3C1-2, maybe stage 4 by now (have yet to get another scan). Anyway, I just started on enhertu through a clinical study here in Canada. I've only had one infusion so far and feel pretty good. I don't know why, but I will say that I was given Akynzeo before the infusion. Since the infusion I have experienced mild nausea and mild to severe indigestion/heartburn, along with GI problems (diarrhea and constipation), so have been taking metoclopromide for that. since diarrhea requires one dietary regime and constipation, the opposite, I've been struggling with adjusting my diet accordingly. Beans and cruciferous veggies make the indigestion and heartburn worse, while the DASH diet make constipation worse. So I've been trying to find the middle ground. Also, because I read that meat and dairy shouldn't be consumed by HER positive cancer patients, and eliminating simple carbs is recommended for every cancer type. Eliminating these food groups have made my diet planning even worse and making me feel emotionally and physically miserable. I also lost 5 pounds in the week following the infusion, which I don't think is such a good outcome since I'm not overweight. So, I started eating a bit of white meat chicken, more eggs, and lots of yogurt. This in addition to ramping up fruit intake and eating as many vegetables as I possibly can. I also sneak in low fat milk in my coffee.
It's been 10 days since the infusion and I'm finally feeling back to normal, mentally and physically, though my energy crashes around 2:00 pm.
Will keep reporting on the state of affairs as continue the chemo treatments.
As for how long, I have the same question. The only answer I keep getting from the the study nurse is that the treatment will continue as long as I show improvement, the growth and spread of the cancer is halted, or the cancer gets worse.
Hope this helps
-
Like -
Helpful -
Hug
1 Reactionhttp://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Trastuzumab%20deruxtecan_monograph.pdf,
a.k.a. Enhertu
https://www.enhertu.com/
Have been in a clinical study testing this target therapy for stage 3C serous cell endometrial cancer, and after 5 cycles it has shrunk my tumors considerably.
-
Like -
Helpful -
Hug
5 ReactionsThat's wonderful! Are you finding it tolerable?
I just started a clinical trial of a very similar drug (also an anti-HER2 antibody-drug conjugate with an irinotecan-like payload, but from a different company). My tumor had a +1 IHC score for HER2, which the original report called "negative", but apparently these "HER2 low" tumors often do respond to these drugs.
It remains to be seen whether my tumors respond. But I'm finding the drug to be very tolerable so far (knock on wood).
-
Like -
Helpful -
Hug
1 ReactionI'm HER2 positive. The drug is tolerable if I take my anti-nausea pills and and anti-heartburn pills. I had developed peripheral neuropathy while on carboplatin/paclitixal previously and find that while it hasn't gotten worse, it is still there.
How many cycle have you had already?
-
Like -
Helpful -
Hug
1 ReactionI just started cycle 1 ten days ago. Had a bit of acid reflux for the first few days. Took an antacid on the day after infusion, but nothing since.
My feet are somewhat numb from my first round of carbo/taxol 2.5 years ago. That hasn't improved, even during most of a year completely off treatment. I'm not expecting it ever to improve.
-
Like -
Helpful -
Hug
2 ReactionsMe neither. Bummer.
@cookercooker Bravo, this is very good news.