Endometrial SEROUS carcinoma

Hi, I’m really sorry to hear about the recurrence. I wonder if your oncologist has considered dostarlimab? (Jemperli). I am taking that, but am not familiar with the others you mention. Have been taking the dostarlimab since my third carbotaxol chemo cycle which was about a year ago, and as maintenance since last chemo in early Sept. dostarlimab is being trumpeted as “game changing” particularly for those with MMR deficient tumors.

I am on dostarlimab (generic JEMPERLI ) for endometrial serous carcinoma. About a year ago in 2023, It was approved by FDA as first line immunotherapy along with carbo/taxol chemotherapy for first time treatment especially for dMMR. Keytruda is now used for recurring endometrial cancer. That is my understanding from people in treatment I met in another support group.

oh, this was just published. Cool. Doesn’t address everything but a good read
https://www.medscape.com/s/viewarticle/gynecologic-oncology-update-endometrial-cancer-treatment-2024a1000bd5?ecd=WNL_trdalrt_pos1_240622_etid6617329&uac=397538PG&impID=6617329
From the comments, some clarification re dostarlimab/jemperli protocol and other specifics as@applies to me per my with tumor characteristics which may or may not be same as any of you. I have/had the serous variant, stage III c. Triple negative so not HER positive, but also dMMR tumor. Jemperli deemed usable for any stage III, IV or recurrent uterine, but esp. now standard protocol for MMR deficient tumors. Therefore, ideal for me. I do not know if it was the dostarlimab, which was added in cycle three of my chemo, but I was cancer free per PET and bloodwork at end of my Brachyotherapy, which followed the external radiation, which followed the brachy. So in remission as of November. Good so far. Signatera tests on regular basis with my bloodwork and those and last CAT OK. So I am now 9 months post end of chemo. Just wait and see.

Talked to doctor Tuesday to press for reasonable expectations on timelines to counter the constant hopeful vagueness. She said in her clinical experience, for people like me recurrence occurs, and within Two years. However, how the dostarlimab may change that outcome is unknown. I’m first generation taking it post approval and clinical trials, so it will be good info for my clinical team to follow.

I would like to hear comparable detail from the rest of you in characteristics of your tumor and treatment with timelines. Obviously I would love to follow anyone else who is first generation Jemperli and with dMMR tumor.

I’d like to know status of everyone. After Serous Stage IIIc surgery and chemo with Jermperli last 4 cycles and maintenance since, external and internal radiation then officially remission since the Fall, last few weeks I had back to back positive signatera tests then elevated esonophils in most recent bloodwork. However, CT is clean. Care team seem to be saying, between the lines of so many “but there’s so much we don’t know” statements, that the cancer is coming back, it’s just a matter of time. No change to treatment schedule.

I am wondering if now is the time to seek a second opinion on how to handle things at this point. What do y’all think? Anyone you have worked with and recommend? I’m just a few hours drive from MD Anderson.

I’m so sorry to hear this dk. On the 3rd round of treatment as you are, what a journey. Hopefully after stabilizing all these other things you can get back on your immunotherapy, maybe another drug?  How are your tumor markers? Awhile back you said first recurrent was “a year later”. Would that be after conclusion of the internal radiation? So one full year of clean monitoring results?

thanks DK, thanks for responding! And for all that history and detail, it is very useful!! Information is sure one of the biggest challenges a cancer patient has, right? Sorry, by tumor markers I meant those tests that may be conducted periodically from bloodwork that indicate or may suggest a change in cancer activity. Tumor marker is not the best term for them all really. For me they test for (1) levels of CA 125 in my blood, I don’t think it has directly to do with my cancer but rather signals a change which could mean my cancer is moving. My levels have been more or less the same since before any treatment, so I’m not sure what it really means for me. In contrast, my (2) Signatera test looks in my blood for cells of my previously removed cancerous tumor. Just after my surgery to hopefully remove all the cancer, the level was a tiny positive value, and has been negative since, until just recently. A small amount, but there. So it is circulating in me trying to do something, even though my CT scan recently was clear.

I haven’t even talked to insurance yet about gett8ng the second opinion, I guess that’ll be my next call.