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

Posted by earnoldnpr @earnoldnpr, Jun 8 5:57pm

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.

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westonan | @westonan | Sep 28 10:35am
In reply to @earnoldnpr "Thank you Thank you. This is super helpful! I've just been wondering whether there is an..." + (show)
@earnoldnpr

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.

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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!

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cookercooker | @cookercooker | Sep 29 12:37pm

Hi,

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#q-a
I wish I could tell you more but have yet to experience the treatment.

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cookercooker | @cookercooker | Sep 30 10:22am
In reply to @westonan "Honestly, the ground glass wasn't bad. It can be caused by Enhertu, not that unusual and..." + (show)
@westonan

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!

Jump to this post

I 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#interstitial-lung-disease
If you scroll down you''ll find information on interstitial lung disease.

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