I am currently having treatment for metastatic bladder with secondary liver;stage 4, I'm on ev+ pembro and I'm suffering really bad tingling in my hands legs and feet, i was wondering if anyone else has or had the same thing and if there is anything that would ease it in anyway. Thanks.
Hi Chaffey
I am sorry you are suffering from what sounds like peripheral neuropathy. Unfortunately it’s a fairly common side effect of quite a few chemotherapy drugs. I have secondary liver cancer but from a different primary. I don’t have experience of enfortumab vedotin, as I think it’s only used on a handful of cancers including metastatic bladder cancer. Looking EV up, peripheral neuropathy is a listed side effect. I got peripheral neuropathy from my combination of paclitaxel and pembrolizumab and understand paclitaxel was the culprit in my case. I think the only way forward is to see if your dosage can be reduced. Once you have it, it can get worse and doesn’t always resolve (mine hasn’t). I try to avoid extreme heat and cold and take care to wear supportive footwear. Mine doesn’t hurt, it’s just irritating and can affect fine motor control.
Incidentally, you have posted in the liver cancer forum. Primary liver cancer is very different from a secondary cancer that happens to be in the liver. Secondary cancers have the same characteristics as their primary and are treated accordingly. So people with primary liver cancer won’t have experience of these drugs. You may get more responses by posting in the Bladder cancer forum , where some people will also have secondaries. We also have a Secondary liver cancer forum but it’s not very busy.
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