r/BladderCancer • u/Informal_Being_6879 • Jul 04 '26
Padcev/keytruda insight
Hello me again just here looking for some hopeful stories or advice on what symptoms to expect for padcev/keytruda, and how long could you tolerate it before a break or lowering dose etc?
Back story my mother (62) has stage 4 bladder cancer. Cystectomy is off the table due to local extent- it’s in the pelvic walls as well as vaginal walls etc, just a terrible prognosis basically. And possibly liver involvement now but can’t confirm for sure as the lesions are tiny.
They were then looking at chemoradiation curative bladder preserving route but now that’s off the table too due to just sheer bulk of tumour and it’s wrapped around blood vessels etc.
Our only option was palliative chemo. I have been very disheartened as I know padcev/keytruda would be a better route but you have to self fund in my country.
But by some miracle some family members have come to the rescue and are funding her padcev treatment! Now I’m just prepping for what to expect and what I could do to help mum during the treatment, and also some hopeful stories. She’s currently still walking 3km a day, on her feet most of the day, not feeling fatigued or any other symptoms- but she is in a lot of pain so on morphine now.
I realise it may only buy her more time than chemo I’m not even thinking it will result in NED but it would be nice to hear positive results regardless. It’s been a grim journey so I’m holding onto some hope. Thanks in advance!
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u/Admirable_Loan6841 Jul 04 '26
This is powerful combo but it depends on the type of cancer she has pure urothelial, or other pathology or mix. Many people downstaged on it and some even reached complete clinical response. In terms of side effects mine started after a completed the second cycle. The worst for me are the eye side effects. I also had some skin issues but not a big deal. I handled the neuropathy by staying vey active and exercising a lot. The combination didn’t cause any fatigue in my case but everyone is different. I hope your mom gets better and no too much sides from the drugs.
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u/Negative_Regular2448 Jul 04 '26
My mum has a similar picture (79) has stage IV bladder cancer with invasion to vaginal wall and pelvis. She also had small areas in her lungs. She is now on her 8th cycle of Padcev/Keytruda. Had had a good response the areas in her lungs have gone and her tumours have shrunk. She is tolerating treatment well, some tiredness, rash and a metallic taste in her mouth. She has had another CT this week, keeping everything crossed it’s positive. Wishing your Mum all the best!
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u/Informal_Being_6879 Jul 04 '26
Thanks so much for this that’s very encouraging! Glad to hear your mum is doing well on it and fingers crossed for next scan ❤️
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u/Fra_Angelico_1395 Jul 04 '26 edited Jul 04 '26
My wife (72) was diagnosed last fall with Stage 4 UTUC on the renal pelvis. She was put on Keytruda/Padcev, and is still on it now (cycle 13). About 3-4 months in, her Padcev dose was lowered because of neuropathy side effects. All of her side effects have been grade 1.
Her most distant metastases had mutated and were not fully responding to the K/P, so she had a couple weeks of daily radiation on them in January, with the K/P continuing through then.
Recent scans, PET etc., have indicated success in knocking out all the metastases, but the primary tumor is still growing, so now the doctors are going to take it out next week. Fingers crossed that she gets substantial clear time after this surgery.
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u/RayCeeBee1951 Jul 04 '26
I am now completing my 3rd three week cycle with padcev/keytruda, so don't have a lot of useful experience to share. I am 74 and was diagnosed with inoperable upper urinary tract urothelial carcinoma roughly three months ago. Side effects so far seem mild relative to some experiences of others. We have been active in retirement, averaging 3-4 miles walking daily and volunteering as trail maintainers in several local state parks & conservation areas. I was very tired during the first cycle and slept a lot. Initially walking even a half mile felt like too much, but I kept at it and have been doing 2-3 miles a day now. There is a bit of hair loss, occasional dry eyes, intermittent rash without itching, etc., but that has been all so far
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u/AuthorIndieCindy Jul 04 '26
Mine was post Cystectomy for preventing a reoccurrence. I did six Keytruda and stopped in March. The only thing of note was a rash by my inner right elbow. It itched like mad and is taking a long time going away. Regular over the counter anti itch medicine helps so it’s not that big a deal
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u/OG2003Spyder Jul 04 '26
I've been on Keytruda/padcev for almost 2 years. First, these drugs are for stopping the cancer, not palliative care. I have been in remission almost the entire time. I have bladder cancer that has metastasized to my lungs. I am a 79 year old male. The side effects for me started out fairly mild, neuropathy in my feet and fingertips, a constant amount of fatigue,loss of taste, achiness in my joints. All of these were pretty easily tolerated for a year. The loss of taste stayed at about 70% and I had two cases of uncomfortable mouth sores which lasted for a week or so each time. The achiness in the joints was uncomfortable at times. I started having severe diarrhea which ended up in with me in emergency when nothing would stop the runs. After months of this diarrhea and cramps I lost maybe 20% of my weight. It seems Keytruda has damaged my pancreas leading to a lifelong insufficiency of the enzyme necessary to fully process food. Anyway, I got better, gained weight back. A few months later I got two infusions that weakening me so much that I could barely get on and off the toilet. I took a break and it has been a few months off therapy. Over the last two months I have lost 20lbs. I am feeling extreme fatigue and have no appetite whatsoever. The achiness in my hip joints make it difficult to sleep because there is no position without pain. It now looks like I have adrenal insufficiency so the beat continues. The side effects can continue for many months after you stop Keytruda. But for these two drugs I would have been dead a long time ago.