Hi there @skybolt - so sorry you are in this battle. But there are good days ahead.
My husband, 63 T2 MIBC with plasmacytoid variant, recently completed 4 cycles of ddMVAC. Our oncologist gave us a schedule of 2 days on the ddMVAC and then 3 follow-up days of hydration. The 4 cycles took a total of 8 weeks to complete - each 2 day cycle buffered by the 3 hydration sessions. The first two cycles were uneventful. The third saw some hair loss and difficulty swallowing liquids (food was ok). The final cycle brought nausea, throwing up, and rough fatigue. But through it all, my husband was able to get out to golf a few times, do some light housework, and take walks around the neighborhood.
We are two weeks away from scans and final bloodwork. We are scheduled for RC in mid-July, so currently we're doing physical therapy to work on the pelvic floor muscles for the neobladder.
Be sure to push liquids to keep the kidneys flushed. We went through phases of BodyArmour, Gatorade, Arnold Palmers, Hint water, and pomegranate juice. And although it's counterintuitive, try taking a walk when fatigue strikes. You can sometimes push through it.
We didn't do anything fancy for food: a lot of saltines and goldfish crackers. Wendy's Frosties were the favorite treat. Otherwise we just made lots of small sandwiches and the neighbors made their best soups 🙂 When nausea hit hard we had popsicles.
Try to offer little pick-me-ups like shoulder rubs, foot rubs/soaks, and just holding hands. If you have pets, keep them away from toilets and sinks as best you can. And Clorox wipes helps keep the germs under control.
My Sweetheart is back at the gym (and never stopped golfing). Tennis will be next.
Good luck to you and your husband. And try to turn your fear into support. When your husband see you're not afraid it can rub off on him.
Thank you for the valuable information. It’s so encouraging to hear the real stories of those who’ve gone through it and passed their brave stories on. Did your husband have a signatera test? . Best wishes and blessings for July RC. Please let me know how it works out.