Kadcyla and suffering Peripheral Neuropathy side effects

Hi Sophie,

it sounds like I’m in a very similar situation to you. I developed peripheral neuropathy in my feet after the 7th round of kadcyla. Very disruptive and disappointing because up until then the side effects had been manageable. I started a similar drug to gabapentin last week but not much has changed. 

I had a discussion with my oncology team today and they have suggested delaying my next treatment for 2 weeks. In addition they have prescribed some magnesium cream to use on my feet regularly which might help but no promises. 

it’s a difficult balance between not completing treatment and risking further nerve damage which could end up being permanent. The evidence suggests that the majority of peripheral neuropathies resolve with time once the treatment is discontinued but it can take several months. 

Most centres seem to have protocols that include a dose reduction of the kadcyla if the peripheral neuropathy is severe but once that has happened they don’t increase it again.

Hope that’s helpful xx

Hi Jane

Thank you so much for your reply and really sorry to hear that you re having the same nerve pain as me. I hope your pain relief starts to kick in soon and yours starts to ease. I ve found that gradually increasing the gabapentin to a higher dose has started to improve things. I still have a constant stinging sensation but my feet are no where near as sensitive so sleeping is better. I was finding not sleeping really hard. If you re still struggling with pain you must call up your oncology team and ask about increasing your dose. To be honest I think that’s the only thing that’s really going to make a difference. Saying that I have bought a pair of sketcher trainers which have a very supportive sole which have made walking more comfortable. I too have been lucky with my other chemo so to get side effects now when I m so close to the end of my treatment is really frustrating. Hope you don’t mind me asking but have you had chemo previously? Surgery? Then Kadcyla? I started on docetaxel and carboplatin last April, then lumpectomy in sept, then 2 more surgeries to get clear margins, and now Kadcyla. My cancer is her2 + and ER + 

Hi Sophie,

I totally agree with you about increasing the dose and hopefully get some sleep. It’s difficult to manage otherwise. 

Yes  I’ve had pretty much the same as you for HER2+ ER+.Same chemotherapy followed by a mastectomy rather than a lumpectomy because the tumour was large. Switched to kadcyla after surgery because of incomplete response to the chemo. 5 days of radiotherapy and ongoing hormone treatment in parallel with kadcyla.