Use of Herceptin for clear cell endrometrial cancer Stage IV

Posted by kbearmi @kbearmi, Feb 4 10:15pm

Have Stage IV clear cell endrimetrial cancer. Surgery on August 31, 2025 removed all visible cancer. Several lymph nodes involved. Carbo/pacil with Avastin not working. Cancer has returned. They're considering using Herceptin.

Has anyone take this? What was/is your experience with this?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for Corie S. @cories

Hi Denise, my mom has high-grade endometrioid endometrial cancer, has undergone one round of carboplatin/taxol chemo, and biopsy results recently showed HER2 positivity. It looks like her oncologist may add it to her treatment between her second and third rounds of chemo (that’s when she has an appointment scheduled to check on her heart, which I know needs to be looked at before she can start Herceptin). Would you mind sharing at what point Herceptin was added to your treatment? I’m just trying to find more info. It seems potentially promising, and my mom’s cancer is especially aggressive so I am hoping for any and all options for her. Thank you.

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I had herceptin with my chemotherapy and I'm receiving it as a maintenance program.

For me I have no known side effects. I did request a referral to a cardiologist just to have one my team should we start seeing it impact my heart. It was driving me nuts after My 3 echocardiogram that each radiologist was using different language when reporting my results that's way I wanted a cardiologist on the team.

Herceptin has been used since 1998 for treatment of breast cancers that are HER2+. Its been very successful. It's just recently been approved for uterine cancer. It's showing very good results.

Time will tell. My doctor is very optimistic about adding herceptin.

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Profile picture for Denise @denisestlouie

I had herceptin with my chemotherapy and I'm receiving it as a maintenance program.

For me I have no known side effects. I did request a referral to a cardiologist just to have one my team should we start seeing it impact my heart. It was driving me nuts after My 3 echocardiogram that each radiologist was using different language when reporting my results that's way I wanted a cardiologist on the team.

Herceptin has been used since 1998 for treatment of breast cancers that are HER2+. Its been very successful. It's just recently been approved for uterine cancer. It's showing very good results.

Time will tell. My doctor is very optimistic about adding herceptin.

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I hope your use of herceptin works. Sadly, for me, it has not. Tumor marker increase. Not sure next treatment option.

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Hi again,
I'm on Trastuzumab deruxtecan (Enhertu). Have had encouraging results after two treatments. This is despite my ca 19-9 and ca 15-3 markers have risen slightly. The study nurse explained that these don't tell all the story and that they reflect all sorts of conditions, e.g., inflammation and the like, as a result from the chemo. The doctor is unconcerned; all she's interested in, and depends upon, are the CT scans.
I started on this treatment about a year after after having 6 rounds of the platinum-based chemo therapy.
I hope this encourages you to try this treatment.

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Profile picture for Corie S. @cories

Hi Denise, my mom has high-grade endometrioid endometrial cancer, has undergone one round of carboplatin/taxol chemo, and biopsy results recently showed HER2 positivity. It looks like her oncologist may add it to her treatment between her second and third rounds of chemo (that’s when she has an appointment scheduled to check on her heart, which I know needs to be looked at before she can start Herceptin). Would you mind sharing at what point Herceptin was added to your treatment? I’m just trying to find more info. It seems potentially promising, and my mom’s cancer is especially aggressive so I am hoping for any and all options for her. Thank you.

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@cories, how are you and your mom doing? How did the cardiology appointment go?

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Profile picture for Colleen Young, Connect Director @colleenyoung

@cories, how are you and your mom doing? How did the cardiology appointment go?

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Hi, thanks for asking. My mom had her second round of carbo/taxol chemo this past Monday (which she’s tolerating better than her first round). The cardiology appointment is April 30. So far all scans, etc, have shown her heart in good condition, so hopefully she’ll be able to get the Herceptin added to her treatment.

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Profile picture for Denise @denisestlouie

I had herceptin with my chemotherapy and I'm receiving it as a maintenance program.

For me I have no known side effects. I did request a referral to a cardiologist just to have one my team should we start seeing it impact my heart. It was driving me nuts after My 3 echocardiogram that each radiologist was using different language when reporting my results that's way I wanted a cardiologist on the team.

Herceptin has been used since 1998 for treatment of breast cancers that are HER2+. Its been very successful. It's just recently been approved for uterine cancer. It's showing very good results.

Time will tell. My doctor is very optimistic about adding herceptin.

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Thank you! I’m glad it seems to be useful. Hopeful it will for my mom as well.

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Profile picture for Denise @denisestlouie

I've had herceptin throughout my chemotherapy and it's what I'm receiving as maintenance. The side effects on a day to day based are minimal. It's not chemotherapy it's a targeted drug. The worse potential side effect is heart toxicity. I am working with a cardiologist to oversee what's going on with my heart.

The drug is showing promise in lengthening life span for woman with rare uterine cancers.

I had no quorms with this drug being prescribed for me.

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Thank you for sharing. I hope you are maintaining.
I was diagnosed with stage 3C high grade papillary serous endometrial cancer two years ago. Surgery, chemo with Herceptin and radiation followed by continued Herceptin only infusions for the last two years. Usually Herceptin stops after one year but I’d read it can help delay the return so I asked my Drs if I could stay on it. They were doubtful insurance would approve it but it was approved and I just received approval for a third year. Now my Dr is uncomfortable continuing it without more scientific support. Crazy.
Can I please ask what type and stage cancer you have and who your Dr is? Desperately Loki g for evidence based data or Drs in the lead on this.
Thank you

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Were your biomarkers taken into consideration when the decision was made to use Herceptin?

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Profile picture for cherylb1106 @cherylb1106

Thank you for sharing. I hope you are maintaining.
I was diagnosed with stage 3C high grade papillary serous endometrial cancer two years ago. Surgery, chemo with Herceptin and radiation followed by continued Herceptin only infusions for the last two years. Usually Herceptin stops after one year but I’d read it can help delay the return so I asked my Drs if I could stay on it. They were doubtful insurance would approve it but it was approved and I just received approval for a third year. Now my Dr is uncomfortable continuing it without more scientific support. Crazy.
Can I please ask what type and stage cancer you have and who your Dr is? Desperately Loki g for evidence based data or Drs in the lead on this.
Thank you

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Hi I was diagnosed with stage 1A serous endometrial cancer in 2021....after a complete laparoscopic hysterectomy with no lymph nodes involved, I had 3 rounds of radiation. In 2022 my cancer recurred in my omentum...I had 6 rounds of chemo combined with herceptin.....I continued with herceptin alone every 3 weeks with no side effects. Summer of 2024 CA 125 started to trend above normal...very slowly I continued with herceptin . In January of 2025 a PET scan showed very early activity in 2 nodes in my pelvic area....Dr. felt it was too early to treat...My next PET scan was in April of 2025 with little change in node activity...but my CA 125 was 74..I started enhertu in May ....I have had 6 treatments and there is NED on my PET scan taken August 12th. Enhertu is considered an excellent targeted chemo for HER2 positive cancer. I am hopeful that It will keep my rare aggressive cancer at bay...I am told there are other very effective treatments if enhertu stops being effective. I am fortunate that the side effects of enhertu have been tolerated well and my CA125 is down to 15....Herceptin stopped working for me after 18 months I am hopeful that enhertu will be my savior !!!

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Profile picture for alohman08 @alohman08

Hi I was diagnosed with stage 1A serous endometrial cancer in 2021....after a complete laparoscopic hysterectomy with no lymph nodes involved, I had 3 rounds of radiation. In 2022 my cancer recurred in my omentum...I had 6 rounds of chemo combined with herceptin.....I continued with herceptin alone every 3 weeks with no side effects. Summer of 2024 CA 125 started to trend above normal...very slowly I continued with herceptin . In January of 2025 a PET scan showed very early activity in 2 nodes in my pelvic area....Dr. felt it was too early to treat...My next PET scan was in April of 2025 with little change in node activity...but my CA 125 was 74..I started enhertu in May ....I have had 6 treatments and there is NED on my PET scan taken August 12th. Enhertu is considered an excellent targeted chemo for HER2 positive cancer. I am hopeful that It will keep my rare aggressive cancer at bay...I am told there are other very effective treatments if enhertu stops being effective. I am fortunate that the side effects of enhertu have been tolerated well and my CA125 is down to 15....Herceptin stopped working for me after 18 months I am hopeful that enhertu will be my savior !!!

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@alohman08 This is very good news. Thank you for sharing so that others here will know that everyone responds somewhat differently. I am hopeful, too, that your rare and aggressive cancer is kept away with your treatments.

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