Confused about my options with Carcinosarcoma

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  • daisy366
    daisy366 Member Posts: 1,458 Member
    #22
    trishmattjon said:

    I was just diagnosed after a laparoscopic hysterectomy...
    On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

    Determination
    Trish,

    With your attitude and determination, I am confident you will keep your hair!! Best wishes with treatment.

    Mary Ann
  • HellieC
    HellieC Member Posts: 524 Member
    #23
    trishmattjon said:

    I was just diagnosed after a laparoscopic hysterectomy...
    On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

    Hair loss - it wouldn't dare!
    I think that your hair is going to stay put - I don't think it would dare to disobey a lady with such determination!
    Seriously - carboplatin is not as bad as Taxol for hair loss, so I do hope that your efforts are rewarded and your hair doesn't thin too much.
    I understand exactly what you mean by unfinished business. I am 54 too - and I have lots to do that cancer is not going to stop me doing! I think that a positive, determined attitude is so important in this batte.
    Wishing you well with your treatment
    Helen
  • Hannah1
    Hannah1 Member Posts: 63
    #24
    Carcinosarcoma
    I am also diagnosed with carcinosarcoma on 2004 had hysterectomy but before I went to do my chemo I had a second opinion at Stanford
    and found out my diagnosis was endometrial carcinoma. I had 7 rounds of chemo, internal and external radiation. I was monitored for 5yrs
    Now my oncology Dr. Told me to see my primary dr. From now on. I went to see a second opinion just for peace of mind but it's up to you
    Keep that spirits up and good luck.
  • Viking45
    Viking45 Member Posts: 2
    #25
    snowbird_11 said:

    Welcome to the discussion
    Welcome to the discussion board although i am sorry you find it necessary to be here.

    If you enter mmmt or carcinosarcoma into search field for the Uterine discussion board -- it's at right above list of discussions - you should get a number of threads on this cancer. Carcinosarcoma is also called Malignant Mixed Mullerian Tumor, MMMT for short. There are a number of fairly regular posters who have this type of cancer and if you also put this in your discussion title you will most likely hear from them. I have UPSC another of the rare Type 2 uterine cancers. All Type 2 uterine cancers are Grade 3 or 4, aggressive cancers. But do the search and you will find discussions of the treatments they have done. My UPSC can be monitored by the ovarian cancer marker CA 125 which is helpful but not all uterine cancers show any notable change regardless of level of disease. It is great that your cancer --if you had to have it :( -- was found at an early stage. Mine was not diagnosed until I was Stage IVB, not so good.
    I hope you will get some insight from the discussions to help you with your decision making.
    Annie

    Uterine Carcinosarcoma
    Annie,
    I hope you are still with us. My wife was diagnosed with MMMT stage 4 at the beginning of this year. She underwent three rounds of ifosfomide/taxol and the tumors doubled in size during those two months. She now is on a targeted drug called Cabozantinib. It is a clinical trial that acts like it's doing something. We won't know for sure until she gets a CT scan in late July. He CA 125 dropped to 21, her bleeding stopped and her abdomen discontinued filling with fluid. It all feels very hopeful. We are extremely interested in hearing what others have done that produced positive results. We are not interested in radiation if it can be avoided. We are hoping that MATCH or sequencing might be an option down the line. I pray you have found a way to remiss this beast.
  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #26
    Viking45 said:

    Uterine Carcinosarcoma
    Annie,
    I hope you are still with us. My wife was diagnosed with MMMT stage 4 at the beginning of this year. She underwent three rounds of ifosfomide/taxol and the tumors doubled in size during those two months. She now is on a targeted drug called Cabozantinib. It is a clinical trial that acts like it's doing something. We won't know for sure until she gets a CT scan in late July. He CA 125 dropped to 21, her bleeding stopped and her abdomen discontinued filling with fluid. It all feels very hopeful. We are extremely interested in hearing what others have done that produced positive results. We are not interested in radiation if it can be avoided. We are hoping that MATCH or sequencing might be an option down the line. I pray you have found a way to remiss this beast.

    Viking45

    Hi Viking45, I underwent the same frontline chemo regimen (after surgery) as your wife but also had 28 external radiation treatments sandwiched between the 3rd and 4th chemo rounds. I finished frontline in May and the results of my first scan in June indicated NED. My gyn-onc had sent the tumor slides to Helomics to be tested with different chemos before beginning treatment. The ifosfamide/taxol combo was the most effective of all the ones tested. I hope this information is helpful.

    So glad to hear that the Cagozantinib is working for her. Please keep us updated on how she is doing. Wishing you both strength and peace, Kim

  • Countrygirl64
    Countrygirl64 Member Posts: 6
    #27
    How are you now?

    How are you now?

  • cmb
    cmb Member Posts: 1,001 Member
    #28
    Countrygirl64 said:

    How are you now?

    How are you now?

    Last online date

    Hannah1's profile indicates that she hasn't been online since 2015. According to her profile, she was diagnosed with several other cancers after uterine cancer, but we don't know her status now.

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