Issue with neuropathy with Padcev/Keytruda combo

@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.

Hi @journeynw, I wanted to check in with you. Have the neuropathy symptoms improved? Will you resume treatment?

We eventually resumed treatment with gembetazine via my Dr rec.
However I had all kinds of side effects on that and including agitating my neuropathy.
I have discussed keytruda again with corticosteroids.
My cancer is slowly returning.
I have read that keyteuda alone ha a low incident of pn (vs keyt plus padcev).

@journeynw i had breast cancer and I also took keytruda. I didn’t have any major complications from it until a few months after I finished the treatment. It started with really bad stomach pain and severe nausea. Went to the hospital and was told “oh you have colitis”. Was prescribed meds that didn’t help. Went back to the hospital and this time they diagnosed me with gastritis. Went back a third time and I was diagnosed with cdiff even though I didn’t have any symptoms of it. I was finally admitted to a hospital due to my electrolytes being depleted, magnesium, potassium and thyroid levels were shot. The day I was admitted I had been having trouble walking and my legs felt like lead. I couldn’t even step off the curb without falling. I spent three months in the hospital with no diagnosis. In the three months I was there my leg muscle and strength was gone I couldn’t walk at all. I was sent to a rehabilitation center in November of last year when I was discharged from the hospital and I had a very painful time with recovery. I had 2 blood clots in my left leg and now my calf in that leg cramps really bad. I have nueropathy in my feet and hands and I don’t have diabetes. I am now walking with a walker. I was told that the keytruda could have caused this. It’s like a storm cloud hanging over me and it’s taken me from my family. I haven’t been home in nine months. I just wanted to let you know that I understand how you feel. I have been looking for some treatments and home remedies that might help. I take gabapentin for now. And I use voltaren muscle cream for my feet pain. I wish you well in your recovery!

I, too, have considerable neuropathy in my feet (and hands). I use a cane to walk if going long distances just for balance and stability. I have no other side-effects from the Padcev I take, however, so consider myself lucky except for the neuropathy. My oncologist told me if I were to go off the Padcev that my cancer would quickly recur. So, it looks like I will be on the Padcev indefinately at this point. I just hope the neuropathy does not worsen. Mostly me feet feel like they are in cement and numb. Weird. My grip strength in my hands has lessened as well. But, I feel good otherwise. So, I feel it is a small price to pay to keep my cancer at bay.

Also, have you tried lessening the dosage of your Padcev? That is what my doctor did and, for me, it seems to keep the neuropathy stable and still keep the cancer in check, at least so far (knock wood). Good luck in your treatment!