Treatments with Niraparib or Kaytruda

dnx
dnx Member Posts: 4 Member
edited March 2022 in Uterine/Endometrial Cancer #1

My mom was diagnosed with Stage 3c carcinosarcoma of endometrium, underwent the surgery and now waiting for radiation and chemo. I’ve been looking for what kind of new treatments are out there and found out about these 2 medications:

- Kaytruda

- Niraparib

Niraparib (ZEJULA) is a PARP inhibitor, I saw a video from 2017 mentioning about clinical trials done with PARP inhibitors

Kaytruda works if genomic analysis is done on tumor and if the presence of a tumor marker MSI-H (microsatellite instability-high) is discovered.

I was wondering if anyone has been treated using any of this medication or if you got some input from your doctors about them?

Thank you very much in advance.

Danny

Comments

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #2

    Hi, Danny

    I’m so sorry your mother is ill. You have found a great place to get information from a lot of wonderful, supportive women.

    I’m currently taking Zejula as a maintenance drug to prevent recurrence. As far as I know none of the other ladies here are taking it, but many have/are taking Keytruda. That’s because Zejula is FDA approved for ovarian & Fallopian tube patients. I had Stage II, F. Tube, and secondary peritoneal (just in pelvis). I take 100mg per day. 200mg is a more common dose, but after 2, 2-unit blood infusions in less than 2 months, my body said, “NO!”

    I started a thread in May or June 2021, titled “PARP inhibitors” There’s not a lot there, but it might give you some information. I think if you enter it in search bar it will come up. You can click on any of our names and go to our Profile pages to read our stories. Also gives you a list of all the threads we have started. I also talked about it at the end of my chemo thread “Waiting of the other shoe to drop?” (Silly typo…waiting for*)

    I’d be happy to answer any questions you have!

    Some of my sisters here will step in to help you about the Keytruda.

    Hugs and Prayers to you and your mother.

    ❤️, Alicia

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #3

    P.S.

    Danny, I’m sure you’re reading our other threads here, and I want to make sure you understand we heartily welcome men here….sons, fathers, husbands!…..just not scammers!

    😎, A

  • dnx
    dnx Member Posts: 4 Member
    #4
    https://csn.cancer.org/discussion/comment/1694274#Comment_1694274

    Hi Alicia, 

    Thank you very much for a prompt reply. I’ve read your thread about PARP Inhibitors and it’s very informative, I will try to search what other ladies are saying about Keytruda.

    My mom lives in UK and with NHS everything is more complicated, it’s hard to get a second opinion there. She will be given radiotherapy for 5 weeks together with chemo (Cisplatin) week 1 and 4, then doctor will reevaluate further treatment. 

    I’ve been doing research if that’s the best approach as I’ve read there are a lot of bad side effects after the radiotherapy.

    As I understood both Niraparib and Keytruda are given after the radiotherapy/chemo and not instead of it?

    I wish you to stay strong and healthy!

    Danny

  • cmb
    cmb Member Posts: 1,001 Member
    #5

    Danny,

    I'm very sorry to hear about your mother's cancer. It's true that treatment protocols are different in different countries.

    One of our newest members is midway through her treatment for carcinosarcoma that includes both chemo and Keytruda. See her latest post at https://csn.cancer.org/discussion/324612/starting-immunotherapy-and-chemo-tomorrow#latest

    I don't recall anyone else here with carcinosarcoma who had both chemo and Keytruda as the front-line treatment for carcinosarcoma, but if I missed someone, hopefully they'll chime in.

    PARP inhibitors are often used in the treatment of ovarian cancer, but I haven't seen it mentioned very often for uterine cancer. Of course, that may change as new research is done.

    I was diagnosed with Stage 3B carcinosarcoma in 2016. Keytruda wasn't approved for uterine cancer when I started treatment (although I do have Lynch Syndrome). And when it was finally approved later in 2017, it was only for recurrences, which I haven't had.

    I had a different chemo protocol than most women with carcinosarcoma. You can read about it by clicking on my username.

    There is also a Facebook group for carcinosarcoma at: https://www.facebook.com/groups/carcinosarcoma/

    While I'm not on Facebook, a predecessor discussion group included women with both the uterine and ovarian forms. So there was discussion of PARP inhibitors on that old site. That may have carried over to the Facebook group.

    And finally, you may want to read the NCCN Guidelines (link included in the FAQ topic above). While the NHS follows its own protocols, it may help you see what the US approach is for this cancer.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #6

    cmb has given you some very helpful information…especially about ways to get more!

    I think I’ve read recently that Zejula has been approved or is being researched as a treatment when a recurrence occurs, so not just for “maintenance. It originally was FDA approved for ovarian patients with the BRCA 1 & 2 genes (breast cancer genes) and just in 2020 approved for people like me….no genetic predictors and “platinum sensitive,” which means 1) had chemo drugs that were known as “platinums”. …(like Taxol)…and 2) the patients cancer was responsive to the chemotherapy (sensitive) and it was successful. You will be learning a lot of new terms you never wanted to know :(( Part of the reason you may have trouble finding about much about Zejula is because it’s relatively new and long-term research isn’t available yet.

    I know some other Ladies will jump in about the Keytruda.

    😎, A

  • dnx
    dnx Member Posts: 4 Member
    #7

    Ladies,

    thank you very much for all the information. I’m glad I found this forum. All your stories are so inspiring and giving hope!

    I downloaded NCCN clinical guidelines. It’s a really great source to stay on top of treatment making sure doctors don’t skip any steps.

  • MoeKay
    MoeKay Member Posts: 495 Member
    #8

    Hi Danny,

    I'm very sorry to hear about your mother's diagnosis. My childhood friend was diagnosed with stage 4, grade 3, endometrial adenocarcinoma in 2017. Since surgery, she has been treated with standard chemotherapy, Avastin, participated in a clinical trial, and then Ketruda and Lenvima. She was not able to tolerate the Lenvima due to side effects, but she continued on the Keytruda alone and has remained on it for close to two years now. Her two most recent CT scans showed no evidence of disease. My friend's oncologist calls her case miraculous. He told her that while it doesn't work for everyone, for some people it works like a charm and that she was one of the lucky ones!

    I hope that your mother is also able to find a treatment regimen that works well for her.

    Best of luck!

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
    #9
    https://csn.cancer.org/discussion/comment/1694349#Comment_1694349

    I just read your profile; wow. Very compelling. You sound very much like me--you've received the best care and the worst, and quite a bit in between! How do we advocate for ourselves without being combative? When I complain at all, they tell me (1) take anti-anxiety meds; (2) get therapy; or (3) find a new gyn/onc. Very frustrating and disappointing at times. On the positive side, I saw my radiation onc for a follow-up and she was super-nice. I even had a criticism, but she was non-defensive and welcoming, calling it good feedback. Restores my faith a little.

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