Hopeful news and why genetic testing is critical to us

Comments

  • cmb
    cmb Member Posts: 1,001 Member

    As I was getting near the end of chemo treatment in May 2017, the FDA approved Keytruda (pembrolizumab) as the first cancer treatment for any solid tumor with microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR). I was heartened by the news that my inheritance of this genetic mutation may actually help me in the future should my cancer recur. It’s so encouraging to read that research into various types of immunotherapies continues and offers options that didn’t exist just a few years ago.

    Thanks for posting this link.

  • Forherself
    Forherself Member Posts: 1,013 Member

    I especially appreciated the educational aspect of this article. A great explanation of what dMMR means. Thanks for sharing this article.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member

    I also found this to be very interesting. Admittedly I request a Pap due to the known possibility of recurrence at the vaginal cuff area, and I probably still will.

  • Jadesun6
    Jadesun6 Member Posts: 2 Member

    I just wanted to say hello and give some possible hope to someone in need of it. I am on the Dostarlimab clinical trail mentioned in this article. I was diagnosed with stage1 uterine cancer in November 2014. I had a full hysterectomy followed by internal radiation as a hopeful preventative for reassurance. I was diagnosed with stage 4 again in August 2020. It was not only scary to find out I had cancer again but it was stage IV and wrapped around my kidney, small intestine, spine and a few other areas. Not only was it inoperable but it happened during the end of the height of covid. Which ment no visitors during my 3 week stay in the hospital! I was offered to participate in the clinical trail. I was more then happy to either hopefully help myself or future cancer patients. I am very happy to report it seems to be both! My tumor started out 130mm X138mm. My last scan was on the 23rd of this month. It now measures 40mm X37mm. That is a football down to about a walnut shell!! I have a CT scan every 12 weeks. There has only been 1 time my scan came back as unchanged. All the other ones have been decreasing in size.I am still on the trail and it is blinded. I have been done with my chemo for a year and a half and just doing the Dostarlimab/placebo. I still have a year and a half to go unless they unblind the trail and/or change it. My doctors (oncologist team, family and kidney) all believe I am not getting the placebo. Of course we won't truly find out till later. My family and I also believe I am getting the drug. I believe it was fate. The code for this trail is Ruby, which is my dogs name. Even if I am on the placebo something is working! I hope is anyone who is reading this needs a little light in their journey this helps. I know the road can be very hard, long and bumpy. The survival rate for reoccurring stage IV uterine is only 17%. I am honored to share this to hopefully send some hope. Even if it is only one person.

  • Forherself
    Forherself Member Posts: 1,013 Member

    That sounds like an awesome result for you. Thank you for sharing. And prayers that it continues shrinking!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,485 Member

    Jadesun6, thank you for sharing your story, but more importantly thank you for participating in the clinical trial. Survivors stand on the shoulders of all those who participate now and in the past, and it is humbling.

    The RUBY trial and GYN018 were hot topics at the SGO conference a month or so ago in Tampa, FL. So many good things are coming out of the trial, which is great news, but so much more to do.

    Hugs dear one.

  • Jadesun6
    Jadesun6 Member Posts: 2 Member

    Thank you everyone. I have never shared my journey with anyone but my family a a few close friends. I just saw this article and wanted to give a personal touch to it. Instead of just a report.

    Another piece of information they gave me is that if you have a certain marker you are not going to have to start with chemo or radiation. You will be able to start the new drug. If you meet certain criterias as of now. It is just the tip of the iceberg. Fingers crossed it will melt and flow quickly. Hopefully it will soon become available and affordable to anyone who it will help.

    In the past 2 months I have been honored to witness 8 bells during my treatment. It's crazy to think during my entire treatment at this center (3 years) I had never heard a single bell until recently. Hopefully this is foreshadowing of things to come.

  • woodstock99
    woodstock99 Member Posts: 206 Member

    Hi - nothing happens when I click on the link. Thanks.

  • woodstock99
    woodstock99 Member Posts: 206 Member

    Great news that whatever you are getting - and yes likely RUBY - is working!