What to expect with EVP (Enfortumab Vedotin and Pembrolizumab)?

@katiw my 12 months of keytruda and Padcev rendered the classic side effects others have described. All subsided except neuropathy and after 1 year off still mild neuropathy. I over reacted to keytruda with rhinitis, pneumonitis and now constant cystitis, but in complete remission of cancer. Working on the cystitis and last resort would be bladder removal.due to symptoms and lifestyle limitations of urgency. The cancer treatment combo is a lifesaver if you can tolerate the side effects. Have faith as we have all been thru what you describe.. BTW, my hair came back thicker than before treatment.

@katiw, chemo brain is so hard. How many more cycles of EVP (enfortumab vedotin and pembrolizumab) do you have left?

@colleenyoung hi! I have three left! I think the mental part is so hard right now! After being in fight mode for a year, it’s hard to adjust to this new “normal” are you still on it?

@katiw

I developed pneumonitis from the Keytruda and had to drop that from the regimen.. I still will continue the others till 1 month of surgery.

@davemilisa oh no!! My eyes water soooo much and my nose runs constantly, good luck on your surgery!!

I did nivo 2025-04 - 2026-03. I have had many side effects. Liver/Lung/Kidney/Sinus inflammation, rashes/itching, trouble walking, low electrolytes, thyroid is failing, eosinophilia. I learned to deal with it. Better than the alternative. Nivo is the twin of Pembro,

There are padcev only patients on Reddit and BCAN Inspire that have done padcev for up to 6 years straight. Dosage reductions and temporary breaks help them a lot. But it is a very toxic treatment.

Another promising next salvage treatment is TROP2. One trial for one product failed. The other trial for another product succeeded. See: https://www.urotoday.com/clinical-trials/from-the-editor/153195-is-trop2-just-not-what-we-thought-it-was-for-bladder-cancer-where-to-go-after-tropics-04.html.

@colleenyoung
I don't know if this is too off topic, but with the mention of chemo brain, I realized that I have not posted what I was able to do, and that has made a huge difference.
Somewhere along the line in reading things on the internet related to cancer treatments, I saw a mention of a clinical trial using modafinil (an ADD medication) to treat women who have had chemotherapy for breast cancer. It made sense to me that it wouldn't matter much if your chemo brain was for breast cancer or another cancer. I printed out the title of the study and took it to my general practitioner. He looked it up and decided to let me try it. I am still not necessarily post chemo. I guess I will find that out in a couple of weeks. I've been on Gem/Doce - first for six weeks weekly, and then monthly for twelve months. My oncologist is not interested in anything but my bladder, so for the chemo brain, I needed help.
The change is absolutely amazing. It feels as if my brain actually wakes up! I am retirement age, basicaly, but still working and also hold two board positions for large volunteer organizations. Needless to say, I couldn't deal well with the chemo brain.
I know my GP is better at listening and thinking outside the box than most, and I am very grateful I get to use this. I have always hated anything that affected my mind, such as antihistimines that would knock me out, but this is different. It just allows my brain to work again.

I developed a horrible rash after cycle 1 that lasted a week. The dermatology oncologist gave me a megadose of Vit. D (100,000 IUs) to take before the infusions, so I'll see if it helps. I just finished the 2nd cycle. I have dry eyes too and am fatigued. My hair started falling out 3 days before the 2nd cycle. I'm debating on cutting my hair very short or shaving my head. Has anyone done that or do you just wear hats and scarves?

I don’t remember exactly when my hair started to fall out on this protocol, but I did end up cutting it all off. Because it was summertime and my previous experience with wigs was that they were just too hot. I went with baseball caps until it got cold and then I switched to wool caps.⚾️🧢😊