Stage 4 Bladder Cancer - Share Hopeful Stories

callingonmyangels
callingonmyangels Member Posts: 3 Member
edited March 2022 in Bladder Cancer #1

New to this group. My husband (55) has stage 4 bladder cancer. We’ve done chemo, currently on immunotherapy, and considering proton radiation. It’s been a year since we started treatment. We have 2 young boys (9 and 7). Trying to stay hopeful. Any survivors out there I’m the same stage that can share hope?

Comments

  • sky22
    sky22 Member Posts: 9 Member
    #2


    how long has your husband been on immunotherapy? how is it working?

  • Lazy_Bones
    Lazy_Bones Member Posts: 17 Member
    #3

    I was on an immunology drug, Tecentriq, which had me NED from stage T4 in about six months, with no real side effects. There are three or four other such drugs, and they all work about the same way. The effectiveness ranges from about 25% to around 75%. I haven't looked at these figures lately, so they may not be accurate now. I've never had any chemo. There's also a treatment option called Tri-Modal-Therapy (TMT) which involves targeted radiation along with minimal chemo and immunology.

  • kbp
    kbp Member Posts: 4 Member
    #4

    New to this group. I have stage 4 bladder cancer ,started from kidney 4 years ago.I had so far three approved treatment and 3 clinical trial. As of now I will be starting in three weeks (wash out previous treatment have to wait which is frustrating)phase 1 clinical trial .

  • Lazy_Bones
    Lazy_Bones Member Posts: 17 Member
    #5
    https://csn.cancer.org/discussion/comment/1694673#Comment_1694673

    Wow! Which clinical trials were you involved in? If I’m reading this right, you still have your bladder. That’s very unusual for stage four cancer after four years. And also what is the clinical trial you’re coming into now?

  • callingonmyangels
    callingonmyangels Member Posts: 3 Member
    #6
    https://csn.cancer.org/discussion/comment/1694446#Comment_1694446

    It’s been 6 months. The first scan showed improvement but this may have been from the chemo he had finished prior. 3 months after that the cancer lit back up again. Our next course of action is proton radiation and continuing on immunotherapy.

  • kbp
    kbp Member Posts: 4 Member
    #7


  • kbp
    kbp Member Posts: 4 Member
    #8

    I am trying to add all my trial link but I guess I cannot send the link !

  • kbp
    kbp Member Posts: 4 Member
    edited March 2022 #9



    ---------- Forwarded message --------




    Yes I don’t mind giving all the details but I have gone through a lot. I will try my best.

    2018 I was diagnosed with upper track UCC . It’s very rare and worse cancer to have. Like I said it’s started from kidney and near by lymph nodes so they removed my kidney and nodes.it was stage 4 metastatic high grade aggressive cancer. And then I stared my journey 3/18 Nephrectomy,5/18 CG CHEMO,11/18 Recurence,start opdivo+BMS986016,11/19 recurrence start Sitravatinib +Opdivo side effect,7/20 raditaion,11/20 recurrence,stop sitravatinib,1/21 enfortunab vedotin,recurrence 4/21 start Sacituzumab govitecan-hziy (trodelvy)

    my cancer stayed in lymph nodes so Dr decided to have debunking surgery to remove all 14 lymph nodes 5/21 this was the biggest mistake I have made,so many compilation!took me about 5 months to recover and then recurrence. To my lung and near by node. Radiation took care of that but cancer back in nov 21 one of the phase one trial did not work and as of know I have lot of cancer nodules in my lung and some of the lymph nodes so now I think I am hoping and praying for new trial to work INBRX-106!

    only thing I can say is don’t give up there are so many trials are everywhere! [Content removed by CSN Support Team.] I hope and pray for the best






    Sent from my iPhone

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