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Issue with neuropathy with Padcev/Keytruda combo
Muscle Invasive / High Grade.
After initial cisplatin moved to enfortumab vedotin-ejfv with pembrolizumab (Padcev/Keytruda).
It worked well with a clear PET scan after 5 months.
Everything good with few side affects until two accidental padcev rounds above recommendations (125%).
Not sure if that was the initial cause but after readjusting the dose in the next two rounds I got pretty severe Neuropathy (legs/feet worst with extreme difficulty balancing and walking, Fingers a bit weak and tingly but otherwise OK (even after reducing PADCEV by 50% in the last round)
I had to stop treatment for now and am in Phys Therapy.
Anyone else have issues with neuropathy or have suggestions on potentially resuming in a protective way? I hated to stop at this point.
Thanks,
Steve
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@journeynw that is a very unfortunate mistake with you suffering the consequences. It sounds like a holiday from medication is the best choice. Unfortunately nerve tissue can be very slow to heal so it may take a while to see any improvement. It's so good that you are doing PT to regain muscle strength. My husband had neuropathy from his cisplatin treatment for bladder cancer. It started about half way through and worsened throughout the treatment. That was 4 years ago, and there has been some improvement gradually over this time. His hearing has not improved though. Keytruda alone did not work for him but did affect his thyroid adversely as well as his appetite.
Congratulations on your great response to treatment. This is just a bump in the road of cancer treatment and you will get through it, just be patient and celebrate having a therapy that has worked for you as you work to regain your balance and walking ability.
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4 ReactionsHi @journeynw, I wanted to check in with you. Have the neuropathy symptoms improved? Will you resume treatment?