ddMVAC neoadjuvant, has anyone experienced this type of chemotherapy ?

One day at a time!

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.

Good luck with the RC! Interesting they did DDMVAC first. Typically with this variant they expedite RC. It is a very scary variant.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10205280/

Yes, thank you. The first thing we learned was not to rely on statistics from before 2024 and the advent of immunotherapy options. Otherwise it was just too overwhelming. However, since January we've found 5 positive outcome case studies (and what tactics they used) which give us a modicum of hope. We also sent the biopsy sample to Tempus for sequencing so we'll know exactly what we're up against.

Excellent. Natera Altera is most commonly used for genomic profiling. Tempus looks promising. My Baptist MD Anderson urologist oncologist suggested that he would have skipped DDMVAC altogether and relied on nivolumab adjuvantly instead. He then had his office call me last week to inform me his peer who actually does the treatments did concur with Mayo on DDMVAC followed by nivo (followed by EVP as necessary).

Signatera was negative, taken post TURBT. We r going to MD Anderson for 2 nd opinion. They are aware of neoadjuvant. Hope they can explain the variant histology better.

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.

Negative signatera is a good start! But speed is still critical with the rare variant!

He hasn't taken the signatera yet. We will do that the week of the 23rd with the other scans.

But one thing I forgot to mention is the steroid mixed in with the chemo. It really wound him up. The nurses called it "wired tired." He got emotional and belligerent for the first 3-4 days of the cycle. So we made a deal that I would drive on the first week of the cycle and he would drive on the second week. Otherwise he was just too agitated to be sitting in traffic.

We also used an app called MediSafe to organize all the prescriptions and their timing. (We also did it the old-fashioned way on legal pads and had copies posted on all the bathroom mirrors.) My free version of the app has a fun "shaking pill bottle" sound to remind you to take your medicine. But we got the paid version for Jeff and he selected Morgan Freeman's voice to remind him - just something really funny to lighten the mood and make us laugh.

Good luck supporting your husband through this valley.

I still have most bottles from DDVMAC steroids unopened. I just suffered through the nausea, fatigue and constipation. My kidneys took a beating and adding more medicine would have made that a lot worse. My oncologist prescribed more steroids for nivolumab. I am also not taking those. Same reason.