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I had spread to lungs and vagina during first line chemo and am now stage 4 and treatment resistant

July 1
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Answer Summary

Members rallied around a community member asking about Enhertu, clinical trials, and treatment options for stage 4, treatment-resistant HER2+... Read more

Members rallied around a community member asking about Enhertu, clinical trials, and treatment options for stage 4, treatment-resistant HER2+ endometrial cancer. Several members shared their own experiences with serous endometrial cancer, including one who has been stable on Enhertu, and another who has managed stage 4 disease for over 10 years using hormone-lowering drugs like Anastrozole after discovering a PRAME mutation. A recurring theme was the importance of self-advocacy, seeking second opinions at major cancer centers like Sloan Kettering and Dana Farber, and using resources like clinicaltrials.gov to find active recruiting trials.

A MyEndometrialCancerTeam Member

I have stage four endometrial serous cancer. I was originally diagnosed with stage 1, grade three in 2017. Had the usual surgery. In the fall of 2024 I had a recurrence. The tumor was very Her 2 positive. The tumor was on my sigmoid colon. Very rare occurrence. I received 6 rounds of carbo, taxol and Herceptin. Then I received Herceptin alone as a maintenance medication. In December of 2025 the scans showed it was not working. I was switched to Enhurtu in January of 2026. All my scans currently indicate the cancer is stable. But I have been loosing weight. During this reoccurrence I went for second opinions at MSK. In both my consultations the doctor felt surgery on my sigmoid colon and left iliac lymph node (also metastic) were appropriate. My oncologist (also a surgeon) felt as long as the medication was working surgery would not be indicated. I am 80 years old and she was concerned about mortality and quality of life after surgery. My doctor and the MSK doctor collaborated. They both respect each other but had different opinions. My doctor is at Mt. Sinai, New York. At one point I was referred to a possible clinical trial but it was only just beginning and a long delay was expected. I do think it is important to do your own research. It is also necessary. You will not get all the information you need from your medical team. The best to you Marcia

July 21
A MyEndometrialCancerTeam Member

Hi Hilary. Is there any way to get a 2nd opinion at a cancer center? They should help you find trials that you qualify for. I can’t believe you have to research them yourself. I was on a trial Rx , still am since trial ended, but not the one you mentioned. I was reading the trial qualifications for the study you mentioned. Very specific. The positives of a trial are very close surveillance and care. What would be important to see is if trial is not effective then what are the other options or trials?
I’m angry that you have to research this yourself and I find it incredulous since most of us aren’t going to know our cancer profile or genetic mutations to the extent that our clinicians do. I’ve had to advocate for care during my journey and I’m sure you do too. I can say , if it weren’t for the trial drug Azenosertib ( Wee 1 inhibitor), I probably wouldn’t be here. Big 🤗 hugs. 🙏.

July 11
A MyEndometrialCancerTeam Member

Thank you so much. I’m scared

July 4
A MyEndometrialCancerTeam Member

Marcia King:
Thank you for sharing and you are right on. It is so important to do your own research (but only at reputable sites) and you have to be your own advocate .
Kathy

July 21
A MyEndometrialCancerTeam Member

Dear Hilary,
I am 76, Stage IV endometrial cancer in the lungs (first went to vagina) . Chemo did not work (did give me peripheral neuropathy) but they discovered that I have PRAME and I react well to estrogen lowering drugs which keeps the cancer from spreading so I have been on Tamoxifen (2 -years only and then ablood clot), Anastrozole (muscle pain so I take it 3 times a week only. It’s been 10 years and I have taken vacations from Anastrozole , too, as much as 12 months. If you have that type of cancer, try Anastozole. I’m at Sloan and first got diagnosed over 12 years ago. I read there are immunotherapy trials for Melanoma (Prame) which are allowing endometrial Stave IV with Prame.
Priscilla

July 21

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