Metastatic Bladder cancer & Padcev w/ Keytruda success

I was diagnosed with Stage 4 MIBC in February 2026. I had cancer in my spine and multiple Lymph nodes as well as the bladder. I went on an aggressive K & P treatment plan (3 week cycle, P&K, P, one week off). I was blessed with only feeling fatigued at the end of the day as a side effect. During the third month I lost my taste and started experiencing peripheral neuropathy. In June after my PET scan I was declared 'cancer free'. So I am in remission on a Keytruda only (every 3 weeks). This week I get another PET scan to see if I am still clean. The neuropathy has greatly diminished and I can taste my food again. I believe that if you can stick with it you should see good results.

I am really sorry this happened. Hopefully EVP will work. Something to consider: as pembro did not work as intended it could theoretically be neutralized by the malignancy. I know this would be off script but perhaps another pd(l)1 could help: ave, nivo, atezo, durva, may work more effectively. I am not a MD so always verify with MDs. I will keep you in my prayers!

FYI: check the Jon D Treffert blog! Patient advocate for EVP. Many clinics now do 6X EVP and if fully clear 2 years P only.

Read Ken’s Cancer Blog. 10+ years ago his nodes lit up like a XMAS tree and he is still here. He did nivo only. He did have a rare variant that is susceptible to PDL1 ICI.

Trop2 is hopefully available soon also. It works similar to EV. https://pmc.ncbi.nlm.nih.gov/articles/PMC12977425/

There are Reddit and BCAN Inspire patients with 4 to 6 years on EV alone with dose reductions and treatment breaks. Because some people cannot take ICI.

I will let you know the results. I would encourage you to get physical exercise everyday you can. I know it help me fight the fatigue. I also encourage you to put your trust in God. He will give you what you need to endure this trial. AND if it is His will, He will help you heal.

@bcm6968

Please do!! I will keep you in my prayers. I typically take a nap after work and then try to walk on the treadmill each day. I agree it helps. I have learned that I have no control over much of it. I'll do as much as I'm able and pray for healing but you are so right... it's truly in God's hands. I can trust in him.

All my best to you. Please let me know how your scan goes.

Update - I got the results from my PET Scan. I am still in remission!!! God is Great!. My hair is growing in fuller now that I have been off the Padcev for 2.5 months. My eyebrows had basically disappeared. Now they are back and I am bright eyed and bushy-tailed. I hope your treatment is going well. Let us know how you are doing with the ide effects, please. I continue to pray for you to have a positive outcome.

@bcm6968 That is amazing!! I'm very happy for you!

I'll have a scan in October to determine if it's working for me. This is my off week and next Monday starts round 4. My hair is almost all gone, I have no energy and just want to sleep, and my taste buds are nonexistent. Small twinges of tingling in my feet but not too worrisome right now. I'd love to drop down a dose next Monday but I went down one level after the first round. I'm not sure if I should ask or not. I just want it to work so that I can stop as well! The thought of doing this for a year is overwhelming.

I appreciate you sharing your great news!! Congrats!!

Update - I got the results from my PET Scan. I am still in remission!!! God is Great!. My hair is growing in fuller now that I have been off the Padcev for 2.5 months. My eyebrows had basically disappeared. Now they are back and I am bright eyed and bushy-tailed. I hope your treatment is going well. Let us know how you are doing with the ide effects, please. I continue to pray for you to have a positive outcome.