PADCEV + KEYTRUDA: results and side effects

@scbil I don't have experience with either treatment. but I just wanted to comment that it sounds incredibly difficult for you and your wife. if it was me, I would have a frank conversation with her oncologist about pros/cons of this treatment, and ask what else can be done to help support your wife. I would also ask to speak with the palliative care team, they can help with improving quality of life.

Thank you for these suggestions. We are meeting next Monday.

@scbil that's good to hear. please let us know how it goes. have they given your wife nausea medication like zofran/ondansetron? my mom used that to keep her nausea during chemo under control. she also used a marijuana based mouth spray to help with improving her appetite. of course that's not a legal option everywhere, but it is where I live.

@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 this note. Some really interesting information and pro/con testimonial comments. We didn’t make our appointment with the oncologist as my wife was just released from six days in the hospital for nausea, diarrhea and inability to eat anything without a gagging response. She was simply too weak to meet with her Dr. today. This is her second hospitalization in a row following the treatments and subsequent significant tests and procedures each time without any definitive results. A new treatment series starts this Wednesday so I’m anxious and concerned to see how the reaction is this time. Thank you again for the information and links. I will have my wife review them all this week.

@scbil wishing you both the best of luck with the new treatment. please update us as you can. 🙏🏻

@scbil, I moved your question about PADCEV (enfortumab vedotin-ejfv) combined with KEYTRUDA (pembrolizumab) treatment to the Bladder Cancer support group https://connect.mayoclinic.org/group/bladder-cancer/

How did your appointment with the oncologist go? Will your wife's treatment be adjusted?

@scbil I have no experience with this drug combination. You and your wife are having a terrible time with this treatment. The goal is to kill or suppress cancer with minimal side effects and that isn't happening for you. I like the suggestion of meeting with a palliative care specialist to see if this treatment can be better tolerated. Perhaps a short holiday from treatment to allow your wife to regain strength and discuss the side effects with her oncologist and palliative care team. My husband did not tolerate Keytruda alone well. He became hypothyroid and really lost his appetite. I was on a similar drug Libtayo and tolerated it better, but was very tired and also lost my appetite. My oncologist was very watchful of any symptoms of side effects while on this treatment for 2 years. I recommend a serious discussion with doctors about your wife's tolerance of this drug combination.

@colleenyoung we are meeting with our oncologist for a new scan and review on Monday. Hope to have an adjusted plan going forward. Thanks for the input.

@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!