PADCEV + KEYTRUDA: results and side effects

@scbil, From reading some of the posts about this combination of treatments under the Bladder Cancer group, it sounds like it can be quite effective for the right person. But not everyone will be able to tolerate each type of treatment. There are people here with stories of adverse reactions from Keytruda for a primary lung cancer, but there are many success stories too. How did the appointment go today? Will she be continuing with the Keytruda/Padcev combination?

This discussion regarding Starting Keytruda may be helpful, if she is continuing with the treatment: https://connect.mayoclinic.org/discussion/starting-immunotherapy-keytruda/

@lls8000 thanks for the reminder to post out results. Scan and oncology meeting went very well. Lung nodules reduced 50% and no new growth noted in the bladder cancer. A real blessing and answer to prayers. Due to my wife’s immune system being “beat up” and her hospitalization following the last two treatment cycles, it was decided to give her a treatment of Keytruda but no PADCEV this past Wednesday and then take a cycle break from treatments. Focus is on her improving her ability to taste/eat/and keep her food down for the next 2 weeks and then restart Keytruda without PADCEV until her next scan later in May. She is still dealing with all the after effects of the treatments but we are encouraged and thankful for the recent results. Staying positive with good medical treatment and care and a prayer army.

@scbil , I was on PADCEV /Keytruda for a recurrence of stage 3 muscle invasive bladder cancer in 2025. (My cancer had been non detectable for 1 year after radical cystectomy and gemcitibine/cisplatin chemo in 2024)
On padcev /chemo I never had nausea but almost immediately lost my sense of taste and desire to eat almost everything. Tough for a foodie who liked to cook. Also lost my hair and had rashes all over my body . The rashes looked like mild sunburns and I looked tan although Im never in the sun without protection. I had a complete response after four cycles and was able to have two additional ones before my quality of life was really bad. I had also lost about 35 pounds. My doctor put me on a two month hiatus and now I am back on Keytruda only. My medical oncologist was pretty certain that for me it was the padcev that was causing my issues. Because I had a full response he explained that I had three options 1- reduced dosage of both drugs 2-Keytruda only 3-no treatment. He recommended Keytruda only. I will be on Keytruda unless something serious develops again for another year or so. Still dealing with severe psoriasis on my legs from the Keytruda, but that now is being successfully treated with Skyrizzi by the dermatology oncologist, who works with my medical oncologist at Mount Sinai in New York.
I also receive zofran before each infusion, but don’t need it on a day-to-day basis. It was a lifesaver when I was on chemo in 2024 with nausea and vomiting. I started eating normally again after the two month hiatus and now no longer need regular visits with a dietitian on my medical oncologist team . My weight has stabilized and I can now eat the healthy things that I used to enjoy again. It’s a very tough balance with quality of life and fighting this disease. I wish you and your wife the best!

@141emp Keytruda+Padcev is a side effect challenge initially. Most of us went thru those effects. Upside, the combo is a game changer in oncology with survival rates. But initially with treatment you wonder is it worth it. I did on multiple occasions and now in "remission".

@sperio I agree😊 I had a complete response on both drugs after 4 cycles last October and cancer is still non detectable based on scans last week and Signatera 2 weeks ago. That said I was having a VERY rough time and my medical oncologist thought it best to change direction a bit after 6 full cycles. (2 month hiatus from both drugs and now Keytruda only. ) The treatments that have become available to us are amazing, but generally not without issues. A wise patient advocate/ mentor I met in NY reminds us that it is different for everyone.😊

@141emp Hi, I've got UTUC in kidney pelvis with planned kidney/ureter/bladder cuff removal surgery and was placed on Keytruda + Padcev to prep for surgery because ineligible for platinum chemotherapies due to decreased kidney function. Completed two cycles before the skin issues require decreased dose and eventually probably cease but Docs are very encouraged that Signatera went to zero after only one infusion. Telling me that for some patients the worst skin issues have the best long term outcomes. Now am weening off of steroids before surgery. So very grateful for the good care at our teaching hospital here in mid-atlantic.

Hi, I started with a walnut small plum size tumor in my kidney pelvis (UTUC) and because my kidney function was diminished I was eligible for Ketruda/Padcev preliminary to an upcoming radical nephroureterectomy. I had 1.5 cycles before it was discontinued because I developed category 3 skin issues which they treated with steroids. After a month on steroids things calmed down. I just had my pre-op CT scan. After first dose the Natera/signatera results were "0" down from 170, and the CT scan just came back perfectly normal. The tumor is gone. I'm astounded. And grateful. Getting ready for the surgery later this month and will hopefully live happily ever after with one kidney.