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Diane Redington

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  • Diane Redington
    Keymaster

    Hello Helena,
    Your mother was hit twice? That is not fair! Has your mother had genetic testing?

    My experience with clinical trials is very frustrating. My experience with the major cancer centers is that they are aware of the clinical trials they are conducting but lack knowledge about all the clinical trials available. You will be referred to clinicaltrials.gov. You may or may not find a trial that admits GCS patients. But how do you know if the trial is a good one? We rely on our oncologists to direct us in the right direction.

    We at the GCS Project are going to encourage women who have been or are in clinical trials to share their experiences. The more information we have, the better decisions we can make. I start a clinical trial in the next week or so. My intent is to document my trial experience and hopefully gain some information to share with other women.
    Please let us know about your experience with Dr. Holcomb and his recommendations.

    Best and sending lot of positive thoughts to you and your mother.

    in reply to: My mom’s story #4916
    Diane Redington
    Keymaster

    Hello Stephen,
    I am sorry to hear of your mother’s diagnosis and complications. I believe that you are likely in good hands at MSK. However, do not hesitate to obtain a second opinion if you are not comfortable with her treatment team or treatment recommendations.

    I cannot respond to the leak complications. However, it seems like the cancer is a bigger problem than the leak so I hope she is able to start chemo soon.

    There is always hope. I was diagnosed at stage 4b and 3 years later I am still doing well. Like your mother I was is good health and worked hard to stay healthy. I think that will work well in her favor.

    Please let us know how she is doing.

    in reply to: My story of Fallopian Tube Cancer #4915
    Diane Redington
    Keymaster

    Hello Janet,
    This website focuses on any Gynecological Carcinosarcoma. That includes Ovarian, Uterine, Fallopian Tube, Vaginal or any other gynecological site.

    I am glad that your cancer was found early. As you know, it is the rarest of the rare.

    I have sent tumor samples to Foundation One on two separate occasions. Unfortunately, my profile showed few mutations and therefore few targets. That is not unusual with GCS. I have also had testing for what is called germline mutations which are mutation that we are born with. It also cam back negative. But there must be some mutational driver so we keep looking.

    Thank you for sharing your story. Please keep in touch.

    in reply to: Clinical Trials #4897
    Diane Redington
    Keymaster

    Hi Suzanne,
    I will be enrolled in the trial at UAB. I will have to travel to UAB every 2 weeks. The trial is being conducted at other sites, but none in Utah where I live. I decided that if I have to travel for a trial, I may as well go to UAB as to continue to work with Dr. Birrer.

    Diane Redington
    Keymaster

    Thank you Heather.
    To all: Has anyone participated in this trial?

    Diane

    Diane Redington
    Keymaster

    Thank you Heather. Have you or are you participating in any trials? I am looking at a trial with both Nivolumab (Opdivo) and Ipilimumab (Yervoy) with the addition of a new agent called OX40. The idea is that the OX 40 will ramp up the T-cells and the Opdivo and Yervoy will remove the receptors that are blocking the T-cells in the tumor from doing their job.

    I hope to start the trial in 2 weeks. If anyone else in participating in a clinical trial, please share your experience.
    Diane

Viewing 6 posts - 1 through 6 (of 25 total)