Uterine carcinosarcoma treatment experience

Christina1001
Christina1001 Member Posts: 9
edited April 2024 in Uterine/Endometrial Cancer #1

my mom had a recurrence of uterine carcinosarcoma after first round.   It is stage IV and has spread to distant organs. Can you share your experience with this cancer, treatments (names of meds) and any other info you may think would be helpful.  Thank you!

Comments

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #2
    My uterine carcinosarcoma treatment

    Hi Christina, I'm so sorry to hear of your mother's recurrence. I posted this same reply to your other MMMT post but I'm pasting it again just in case:

    I was also diagnosed with MMMT (uterine,stage 1b, grade 3). My frontiline chemo treatment used the same meds that your mother will be receiving (Ifosfamide/Paclitaxel). They seemed to work for me as I have been NED since June 2016. 

    I received 6 rounds of treatment every 21 days (with 28 external radiation treatments between the 3rd and 4th rounds). Each chemo round took 3 days. The first day was the longest - about 8 hours -because both meds were administered (along with Mesnex to protect the bladder from the Ifosfamide and a whole host of anti-nausea meds). The second and third days were shorter - about 4 hours - because just the Paclitaxel and the anti-nausea meds were administered.

    I also received a Neulasta injection the day after each round - the cool little "onpro" injector that automatically gives you the shot the next day. 

    Overall, I had very few side effects from the chemo. The Neulasta injection was a different story. I had major bone pain in my jaw after the first shot. It was super intense so I ended up taking some of the pain meds that were left over from my sugery along with keeping a heating pad on my jaw. It took about 2 days to start to subside and then I just took Advil. The second - sixth shots were not nearly as bad so I just took the Advil along with the heating pad. Of course, I lost all my hair, eyebrows and eyelashes but those all came back after the chemo ended. My taste buds changed too but that seems to have cleared up now, too.

    I hope this information is helpful. Please don't hesitate to ask any questions. Wishing you and your mother strength and peace as you continue on this journey. Kim

  • bilalbasitabbasi
    bilalbasitabbasi Member Posts: 3 Member
    #3
    https://csn.cancer.org/discussion/comment/1554348#Comment_1554348

    Hi, great to read your story. I wanted to check how are you doing now?

  • Forherself
    Forherself Member Posts: 1,018 Member
    #4
    https://csn.cancer.org/discussion/comment/1714321#Comment_1714321

    I don't know if you are aware, this post is 8 years old. I hope she answers but our website has changed in that time. She might not see your post. There are others here with carcinosarcoma. The board is just unusually quiet.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,521 Member
    #5
    https://csn.cancer.org/discussion/comment/1714323#Comment_1714323

    I think sometimes it is hard to tell so thank you for pointing that out. I know I fall into it myself and have to stop. I still struggle with the site days.

    I will say anyone coming here should ask for a genetic assay to be done. So many new things going on since 2016. It is hard to believe.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #6

    Hello, I'm doing fine. All treatments and scans ended in 2020 for me. Life has moved on and I am grateful to be living it fully. I hope that you are able to do the same. Stay hopeful! Kim

  • Forherself
    Forherself Member Posts: 1,018 Member
    #7
    https://csn.cancer.org/discussion/comment/1715054#Comment_1715054

    It is so wonderful to hear from women who have posted their stories. I am so grateful to see you here again! It sounds like you are in a good place. Thank you for the update!

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