Immunotherapy Fail-dostarlimab

Dak82
Dak82 Member Posts: 109 Member
edited March 2022 in Uterine/Endometrial Cancer #1

I knew this time would come but I didn’t know how fast. For the past month I’ve had some severe pain in my right hip at the top of the bone. I never thought it was “cancer related”.

Last Friday a week ago I sent a note to my team detailing how bad I felt and got an acute care appointment at the cancer center. Even with oxycodone and gabapentin they couldn’t figure out hour how to manage the pain. The kicker was large scale growth of the tumors in my lungs and abdomen. An MRI two days later showed a tumor cozying up to my T12 vertebrae. The radiation oncology team jumped on this as another opportunity for Some palliative radiation: maybe get rid that one tumor and associated pain

I meet with my oncology team tomorrow. I am still in the hospital because I keep running temps I admit to feeling feeling pretty bad. My lower legs are swollen to my toes and I ache all over. Hopefully we have some options but I know they are few. I am shocked at how fast this all came on. I go everywhere with an O2 tank—sure didn’t think that would happen this quickly. We are filling out advanced directives and burial plans. We don’t know how much time I have but I sure hope to find something that give us a bit more time.

i will provide more information as we we get it. This week has been a very physically and emotionally draining. Love to all of you.

Deb 1

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #2

    Oh Deb, my heart is breaking for you. I'm so sorry this is happening. You have been and continue to be a bright light on our team. There are no words..... Please continue to update us when you feel well enough to do so. Sending love and hugs to you and your family.

    Cindi

  • cmb
    cmb Member Posts: 1,001 Member
    #3

    Deb,

    I am beyond sad to read about these developments, but so appreciate that you've taken the time to update us. I dearly hope that the hospital staff can find ways to get you comfortable and pain-free so that you can return home in comfort.

    Know that many prayers and loving thoughts are with you now from all of us here on the Board.

  • Afoste3
    Afoste3 Member Posts: 39 Member
    #4

    Hi Deb,

    I'm so sorry to read this news--it is overwhelming and terribly sad. I'm also taken aback by how quickly the cancer has progressed; I'm sure your family is struggling to process this news. Like cmb said I hope they can get your pain under control so that you are comfortable. I also hope your kids and siblings are able to come (if they aren't there already). And you are giving your family a gift by getting arrangements in place and making sure they know what you want with all aspects of what may lie ahead. Though I'm praying that there is something that can slow the cancer for a period to give you some more time.

    Anne-Marie

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #5

    Deb,

    This news is sad, I am so sorry that your treatments did not work. Your indomitable spirit and good cheer throughout your time here with us gave many of us inspiration of how to manage and live as well as we can, as long as we can. You are an important part of our group and sometimes we don't get the opportunity to say how much a person meant to us, so thank you for that. There is a strange but very comforting bond we have with people we have never met on our little site here, we are here for you if you feel the need.

    Love to you,

    Denise

  • Forherself
    Forherself Member Posts: 1,013 Member
    #6

    I just want to send love and admiration for. you. No there are no words. Hugs

    Sue

  • Tamlen
    Tamlen Member Posts: 343 Member
    #7

    Deb, I am sending love and hope that they're able to help you get the pain down to a comfortable level. Thank you for taking the time to fill us in; how I wish the news was better for you.

    Big hug,

    Tamlen

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    #8

    I'm so sad to read this update, but thank you for sharing with us. Hoping and praying they can find something to give you pain relief and more time.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    edited February 2022 #9
    https://csn.cancer.org/discussion/324815/immunotherapy-fail-dostarlimab

    Deb 1 -

    I couldn't stop thinking about you yesterday. I know you hesitate to share the bad news, and have down-played the seriousness of your condition. Yesterday at the beach, I thought, "I want to get Deb here." Oh, Deb...I need more time with you, as we all do, and so want you to find something that will work. But edited to add this: if it's your time, I want you to know how much I've learned from you. Your matter-of-fact sharing of information, the "holding back" a bit to spare us, your love for your people. If you can no longer write, but have energy to read, please know that I will hold your memory so dear. Thank you, Deb. Thank you for teaching me "how" to be a person with a bad disease.

    I love you - your spirit, your athleticism (it's part of you, no matter this disease), your love for your friends and family. Please know that up here in the Pacific NW, there's a friend with open heart and open doors. I will be checking in often, and looking for you.

    Once in Vietnam, an exhausting backpacking trip with my ex (we went on the road and stayed overseas for about nine years), I was in a beautiful town called Hoi An. As we left, a young man who I'd become friends with looked sadly at me and said, "the next time you come, I will know you from a distance." He would recognize how I walked, how I looked. That stuck with me. Who knows why.

    I will know you from a distance, dear Deb 1.

    Deb 2

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #10

    Deb #1 and Forever #1,

    I am texting thru tears. I was so hoping and praying with you and yours that immunotherapy would be successful in stopping this wave of progression. It appears the wave has overtaken you and grief has overtaken us all.

    You have been a great sister to us, always moving forward and always sharing with us. Know you have made such an impact on me. I will not walk my meer 1 mile daily walk without thinking of your recent commitment to much greater miles in February to benefit a Veteran's charity.

    May you be made comfortable and find comfort in those that surround you with love.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #11

    I have been sadly sitting here staring at the little white box, hoping to find the right words to put into it. The puny ones I have seem woefully inadequate. I thank you for sharing yourself with us and for all the support you have given. I am also grateful for your service to our country. I hope you receive the gift of more time.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #12
    https://csn.cancer.org/discussion/comment/1693900#Comment_1693900

    I am waiting and watching, and hope we hear from you or your family, sweet one.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #13

    Dear Deb,

    When I found this last night I was so, so sad. I started crying as I shared your news with my husband. I could see that he , too, was very upset. We all travel here together, and share our joys, but then must bear the sadness, also. I had so hoped that your newest treatment was working. I’m so sorry that it didn’t and you are in pain.

    You have been a Rockstar here! An inspiration! I remember when we first met you here! I was impressed with your athleticism and ability to proceed under terrible circumstances. I’m so grateful for all of your contributions to us. Thank you.

    My heart is broken for you and your loved ones.

    With love,

    Alicia

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #14

    Deb, I have not been on for a week or two and I can only imagine how overwhelming this is for you and your family. It is so sad to hear what you have going on and I honor your bravery and pray for your strength. Hugs dear one. You give us so much. NoTime

  • jan9wils
    jan9wils Member Posts: 209 Member
    #15

    Praying for your comfort and a bit more time for you as well. I wish I could adequately express how important your posts and comments have been for me. 😘

    Jan

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #16
    https://csn.cancer.org/discussion/comment/1694250#Comment_1694250

    I think our Deb is gone.

  • Lyn70
    Lyn70 Member Posts: 214 Member
    #17

    Deep Sigh.....Not ever gone from this board with her wealth of experience and wisdom or from our hearts for her bravery.

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #18
    https://csn.cancer.org/discussion/comment/1694289#Comment_1694289

    That's right, my friend! Never gone, and always here with us. I was just thinking I would soon be reviewing some of our diet discussions. I remember her oncologist getting pretty unhappy with her when she was doing longterm fasting! She was fairly small, so a couple pounds made a big difference. Our courageous Deb 1, and we will always love her.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #19

    Hey, Deb2

    Have you heard something or are you assuming because we haven’t heard from her? I was still holding out hope for her :(( ….for her to be better and have more time. I’ve checked Salt Lake City obituaries and I haven’t seen anything. I know she talked about going to Huntsman, but I don’t know if she was actually in the city or a town nearby. I thought, too, that she might ask a loved one to contact us.

    We will always love her. ❤️❤️❤️, Alicia

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member
    #20
    https://csn.cancer.org/discussion/comment/1694296#Comment_1694296

    There's always a sliver, but we know--by reading her OP closely--that she was really suffering, and filling out that final paperwork. She wrote some words twice, and was exhausted. Our Deb would have come back to tell us what was going on if she could, but I'm thinking she was overcome. There's a sliver of hope, but I have heard nothing and just think she was really ill. We will know in time! Waiting is hard, so we just have to be courageous and loving, as that's what she--and all of us--would want the most, I think <3

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