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Metastatic Bladder cancer & Padcev w/ Keytruda success
I'm dealing with BC that has metastasized to my thoracic lymph nodes. It reappeared in ct DNA within 3 months of stopping immunotherapy. I was all clear until that point after a RC in Nov 2024 etc). Sometimes things don't go as we plan them.
I'm starting round 3 (of forever) with Keytruda and Padcev. I'm more fatigued than I expected but my body is trying to figure out its new normal.
Has anyone taken P&K after metastasis? What was your experience? Did you feel a little better after a few rounds, did you see positive results?
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I had that regiment for 12 months. First 2 months were the most difficult with itching, fatigue, no appetitie, and dry mouth. But I continued through it before I had read the research and positive outcomes. Some symptoms decreased, but none increased. Eventually, appetite returned I gained weight, but the fatigue lingered. Not sure if data is correct but only about 50% of patient can take the regiment for 12 months. I am now in remission with surveillance every three months. My bladder however, continues to be inflamed and we are working on a future direction for that. Hope this helps.
@sperio thank you! It does help. If you don't mind me asking did you stop as soon as you went into remission or due to side effects at 12 months? Hopefully round 3 will be a little easier. It's a bit of a mental game for me right now since I was feeling great right before a scan said that I wasn’t so great. Fingers crossed it is working.
@jowilliams1 I stopped due to all parameters Signatura being 0 and CT no progression not because of side effects.
Wife was diagnosed with BC in January 2025 and underwent radiation/chemo twice weekly til mid year and then went on BCG treatments until early November. BC had metastasized to the lung and P&K was then initiated aggressively. This caused extreme fatigue, weight loss and difficulty with taste which eventually led to hospitalization. In February 2026 a new schedule of P&K with two weeks on and one off was started. Fatigue and life quality was still difficult and P&K treatment was then reset to a forever once every three weeks schedule. Fatigue, stomach issues and loss of taste still persist but they are manageable and provide an acceptable quality of life. New scans are in three weeks so we will make new treatment and scheduling decisions then. Never easy days but P&K provides manageable care as long as we remain adaptable. We are extremely thankful that treatment is available.
@sperio I'm happy to hear you did well with it. Thank you for sharing. I wish you the very best!
@scbil Thank you for sharing. I'm doing two weeks on, one off and just started round 3. After the first round I asked for a reduced dose which my oncologist easily agreed to do. He explained it is a marathon so it has to be tolerable. I have some of the same side effects but am hoping they will improve. The fatigue is my biggest challenge. Until my first scan I want to try to stick with the new dosage so we can hopefully see progress.
All my best to your wife and to you (because I'm sure it isn't easy on either of you). Thank you!
@jowilliams1 sounds like you have a terrific attitude. After our initial P&K series and before going to the once every three weeks schedule, my wife’s scan showed some reduction in the lung cancer nodules and no growth in the BC. We do get some encouraging news on this journey and are thankful for our Oncology team and the Keytruda which we feel gives a fighting chance. As you said, it’s a marathon and will be ongoing. Best wishes and prayers on your journey.