Forum Replies Created

  • Tomk

    Member
    December 13, 2021 at 3:28 pm in reply to: GC and low LVEF

    Jack R

    Thanks for your good wishes and as always informative messages. and good advice.

    Some notes completing 2 cycles of Padcev:

    The first cycle was difficult, the worst being severe neck to toe rash, if you can imagine a beet with chicken pox, with unrelenting itching and no response to topical steroids. Prednisone eventually quieted it down to where it was tolerable. However there were no other significant side effects, Dry skin, dry mouth, raw tongue, and some fatigue.

    They decreased the dose for the second cycle and added 10 mg Prednisone for 4 days starting the day of each infusion. That has worked. The dryness and minor fatigue is still with me, but other than that I feel normal.

    One more cycle and then RC, which is scheduled for Feb 3rd. I am interested in any advice or experience with urostomies or neobladders as I need to make that decision soon.

    TomK

  • Tomk

    Member
    November 7, 2021 at 8:59 pm in reply to: GC and low LVEF

    Hello Jack,

    I’m due to start a trial next week (Enfortumab Vedotin) at Mayo in Phoenix. Three 3 week cycles of chemo, then RC, then 6 more cycles. Study title is SGN22E-002 if your interested. I would be interested in anyone’s experience with Padcev.

    Tomk
    MIBC
    pT2a

  • Tomk

    Member
    October 26, 2021 at 5:06 pm in reply to: GC and low LVEF

    City of Hope is in Los Angeles, California and is a major Cancer center. I live in Arizona and am waiting for an appt at Mayo in phoenix. I agree with you about going to a top Cancer center and will postpone my chemo here (due to start on 11/3) if I get an appt. at Mayo. I just want to be armed with as much info as possible.

  • Tomk

    Member
    October 26, 2021 at 4:41 pm in reply to: GC and low LVEF

    Thank you Alan for your response, it’s great to feel like I have somewhere to voice my concerns. 
    Sorry about the unfamiliar acronym, LVEF stands for left ventricular ejection fraction. Mine is low due to a heart attack in the past.

    I actually did get a second opinion from City of Hope in LA. They recommended a radical cystectomy followed by adjuvant nivolumab once a month for 12 months because of the LVEF concern. My local Docs recommended 4 three week cycles on GC followed by a partial cystectomy as the 5cm tumor is on the dome of the bladder. Hopefully this clarifies my situation.