Endometrial Serous Carcinoma stage 3C

24

Comments

  • Miha
    Miha Member Posts: 33 Member
    #22

    Thank you so much for lifting my spirits this morning. God Bless You. It is so good to read success stories overcoming this monster called endometrial serous carcinoma.

    Miha

  • Miha
    Miha Member Posts: 33 Member
    #23

    Hello,

    I had the CT scan after third chemo cycle with Paclitaxel and Carboplatin, to see if the tumor has shrink enough to make surgery an option. The results showed that the lymph nodes actually increased in size with mass pushing on the vena cava ( thrombus of vein) It was recommended to continue three more cycles and add Herceptin. I am worried because it didn't work for the past 2 months.... and maybe we need to thing of a different plan to starve off this monster.

    Please advise, maybe there is someone out there with the same suffering...

    Thank you so much

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #24

    Miha,

    I also was dx with serous, but I was Her2 negative. I am currently NED, dx in 2018.

    Herceptin, also known as Trastuzumab, is being used for serous with Her2 positive findings, with success. Here is the article from 2020. This article also includes statistics about survival so you may not want to read it, but just know these are phase 2 trial results.

    https://www.targetedonc.com/view/trastuzumab-added-to-chemotherapy-improves-survival-in-uterine-serous-carcinoma

    I cannot speak to your treatment plan as I have no medical background, but it is very similar to others we have seen on our site for your type. There is always hope.

    I would agree with my fellow posters, please avail yourself of a 2nd opinion as to your treatment plan, I know that it is hard to tell your doctor that you would like a 2nd opinion as it seems like you are lacking confidence in the doctor, but they are requested all the time. The one thing I have learned is that there are varying approaches as to treatment protocols, some are more aggressive than others. Now that genetic profiling is done on most tumors, they can offer treatments based upon the results, rather than guessing what treatment will work with what tumor profile.

    Good luck to you, you are not alone and let us know how you are doing.

    xxoo

    Denise

  • Miha
    Miha Member Posts: 33 Member
    #25

    Thank you Denise,

    I have seen another doctor. She thinks we should try something else as the Taxol and Carboplatin didn't work and after three cycles the lymph nodes were slightly larger. (Ca 125 went down to 14). I believe she was thinking of Doxil. Are there other ladies with similar experiences?

    Thank you so much!

    Miha

  • Forherself
    Forherself Member Posts: 1,018 Member
    #26

    I'm sorry to hear the first round of chemo didn't work. I am surprised to read they wanted to continue with those drugs when they didn't work SO I am glad to read your second opinion suggests changing medication. I hope someone who has had this experience signs on. The board has been quiet lately. Hugs to you.

  • Miha
    Miha Member Posts: 33 Member
    #27

    Thank you so much for your response. I have been checking the discussion boards like crazy to find others with similar experiences. It would be very helpful. Thank you

  • cmb
    cmb Member Posts: 1,001 Member
    #28

    I had a different type of uterine cancer (carcinosarcoma, also aggressive like serous) than you have. I was able to have surgery before chemo, but since I was staged as 3B, Grade 3, I also had chemo afterwards. I had a two-phase course of chemo – 4 cycles of Paclitaxel/Carboplatin followed by 4 cycles of Ifosfamide/Doxorubicin. This two-phase approach was planned from the start and not based on how I responded to the first four cycles. Ifosfamide/Doxorubicin are older chemo drugs that aren’t used as frequently anymore for uterine cancer.

    I don’t know which of the four drugs worked for me, but I didn’t show any signs of cancer after I finished all eight treatments. Nor have I recurred since.

    Doxil is a newer (relatively speaking) variant of Doxorubicin and there are other women here who have taken it in the past. I’m not sure any of them are still active on the board, but you can try searching to see what comments have been made regarding Doxil. I believe Doxil is still prescribed quite often for breast cancer, so you can also try searching that board to read about how other have reacted to this chemo.

    I found the Ifosfamide/Doxorubicin cycles tougher for me to get through and I needed extra supportive care, such as more antiemetics and fluids the week after the treatments. A patient’s heart function is normally tested before Doxil is used since it can strain the heart. There is a limit on how much Doxil someone can receive in their lifetime because of this rare side effect.

    I’m glad you’ve found a doctor who is going to try another chemo. My mother struggled with cervical cancer that kept recurring for several years until a different doctor tried a new (at the time) chemo. This one actually worked and kept her cancer free until she died from other causes some years later.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #29

    Such good points, cmb. The Doxil type regimen, IIRC, from others posts can have some harsher side effects than those from the regularly prescribed drugs.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #30
    https://csn.cancer.org/discussion/comment/1701603#Comment_1701603

    I am happy that you were able to see a different doctor and I hope you are able to have the Doxil. I believe there are threads you can look at that mention the efficacy and side effects of Doxil.

    None of this is easy, most of us have been in a position, like you, searching for answers, hoping that the prescribed treatments work.

    We are here for you so please continue to let us know how you are doing.

    xxoo

    Denise

  • Miha
    Miha Member Posts: 33 Member
    #31

    hello,

    I have decided to stick with my first doctor and give Paclitaxel and Carboplatin another round, and if after 4 rounds the Lymph nodes are still getting bigger( CT scan) I will switch to Doxil. The doctor that i've seen for a second opinion advised to stop carbo and Paclitaxel and immediately start Doxil. The board seems really quiet. If you read my post and can advise or have been in similar situation please write back. I am really sad, as it seems I go from bad to worse in a matter of days.

    Thank you.

  • Forherself
    Forherself Member Posts: 1,018 Member
    #32

    We all make our decisions based on choices that are cloudy. Nothing seems to be cut and dried. I support you in your choice as you have the best information. We all had doubts. Doxil is hard to take, but CMB did. I'm sorry you are feeling sad. Do you have support at home? Just one person you can talk to seems to help. Hugs to you.

    Sue

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,517 Member
    #33

    Miha, I don't know how many women here have had Doxil, I didn't so couldn't really add anything. I do remember a few, and I had started a reply twice now, but Doxil reportedly hard on the body. Just something to keep in mind.

    I had asked about genetic testing because, believe it or not, immunotherapy has started to be seen in initial treatment not as a follow up. Are you working with someone who has looked in to clinical trials or is on top of what is going on with this? I think the one woman asked if you were working with a teaching hospital?

    My heart breaks for you dear. Please continue to push for answers. We have to be our own advocate as much as we wish others were doing it for us.

    Hugs and let us know how you are doing.

  • Miha
    Miha Member Posts: 33 Member
    #34

    Thank you so much for your reply. I really appreciate it. I am so worried that my stomach hurts, and my tears never stopped today. If I can only get to have the surgery…, and something to srink the tumor

    Before chemo, my lymph nodes were as follows:

    preaortic image 2/83, 3.8x1.8 cm, previously 2.9x1.8 cm

    aortocaval image 2/85, 1.9x1.5, previously 1.6x0.6 cm. There is mass effect on the inferior vena cava

    left para aortic image2/94, 1.7x 1.3, previously 1.4x 1.3

    left pelvic sidewall, image 2/ 125, 3.7x,2.9cm, previously 3.7x 1.6cm

    Am I crazy to still get a round of carboplatin and packitaxol? In the hopes that will work and it needs more time?

    Thank you for everything

  • Miha
    Miha Member Posts: 33 Member
    #35

    Hello,

    Is there anyone that had treatment with Carbo and Paclitaxel and didn't work for three sessions, tumor did't shrink, lymph nodes got a little bigger but continued to get to the total treatment of six and had good results?

    Thank you so much. it my seem like a stupid questions but one can never know ...

    Thank you so much for all the support, I really appreciated

    Miha

  • Forherself
    Forherself Member Posts: 1,018 Member
    #36
    https://csn.cancer.org/discussion/comment/1701742#Comment_1701742

    Miha I have not had that treatment but I do read research articles. Have you had a second opinion from a major cancer center? They are discovering new treatments for EC but some of the clinics might not be aware. And have you asked about clinical trials? You have not mentioned immunotherapy drugs. These are some questions you could ask to help you make your decisions.

  • Forherself
    Forherself Member Posts: 1,018 Member
    #37
    https://csn.cancer.org/discussion/comment/1701742#Comment_1701742

    Miha I have not had that treatment but I do read research articles. Have you had a second opinion from a major cancer center? They are discovering new treatments for EC but some of the clinics might not be aware. And have you asked about clinical trials? You have not mentioned immunotherapy drugs. These are some questions you could ask to help you make your decisions.

  • MoeKay
    MoeKay Member Posts: 495 Member
    #38

    Miha, I'm in agreement with NoTime's and Sue's recommendation that you consider asking your doctors whether you would be a candidate for immunotherapy. While it doesn't work for everyone, my childhood friend, who was Stage IV, grade 3, at diagnosis in 2017, has had remarkable results on immunotherapy. After having gone through numerous prior treatment regimens, after which her CT scans repeatedly showed cancer progression, in July 2020 she started immunotherapy. Since then, her last three CT scans have shown no evidence of disease, which her gynecologic oncologist has called "miraculous."

    If I were in your situation, I would definitely want to know upfront whether I was a candidate for immunotherapy or not, so that I was in a position to make an informed decision about future treatment options.

    Wishing you all the best.

  • MJS19
    MJS19 Member Posts: 47 Member
    #39

    I was stage 1 and recurred after less than 2 years, and I know several people who were stage III and have not recurred several years later. So, you definitely have reason to hope -- try not to be discouraged by your stage. As someone else said, we are each of us an n of one.

    Good luck,

    MJS

  • cmb
    cmb Member Posts: 1,001 Member
    edited December 2022 #40
    https://csn.cancer.org/discussion/comment/1702006#Comment_1702006

    I'm sorry to read about your recurrence. I know you asked a separate question about PARP inhibitors and the related costs. There are more options now to treat recurrences than previously available. I hope that you're able to secure insurance approval soon so that you can begin treatment . Keep us posted on how it goes for you.

  • MJS19
    MJS19 Member Posts: 47 Member
    #41

    Thank you. I recurred in November of last year, repeated chemo, and had a "complete response." This time along with the standard taxol/carboplatin, I took herceptin and will be finished with that next week after 18 treatments. My CA125 is on a steady upward trend from 11 to 19, which is concerning, and, even if not now, I will eventually need PARP inhibitors and was looking for information to help me decide what to choose during open enrollment. I discovered after I posted yesterday that neither Medicare nor private insurance will cover a PARP inhibitor for UPSC since it is still considered "off label." The cost without insurance is about $13,000 a month, so I won't be able to take it. The alternatives are hard to tolerate and don't bring much survival benefit, so unless PARP inhibitors become standard of treatment before I need them, that's it for me. It's a race against time, and I don't expect to see PARP inhibitors become standard of care in time for me.

    Thanks again,

    MJS

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