Has anyone else either had peripheral neuropathy symptoms start during the above targeted therapy infusions or around only having targeted therapies and not from chemo. I started to feel numb and tingling in my finger tips which have lead to PN and nerves firing in the night in my arms and sometimes legs. I had chemo, them surgery then targeted therapies only. I also have neuropathy of the tongue which is unusual. I have a real dilemma about continuing treatment. As the onc team say it’s nut linked but then why did I experience it during treatment. Any similar experiences or literature backing up the connection between targeted therapies and PN would be appreciated. Many thanks, Kali
Hi Kali
Thanks for posting. While you wait for others with similar experiences to reply, you can post this message to the Ask Our Nurses board, where a nurse can provide support and information.
I hope this helps.
Best wishes,
Saskia
I have symptoms numbness, dropping cups, unsteady legs. Can t help though as I am on Paclitaxol and tratuzumab/pertuzimab. My oncologist has reduced my taxol dose. I have read that neuropathy can carry on after chemo has finished but it does seem to be known side affect of T&P. I hope yiu got some answers from your team.
Hi Kali.
I had PN after chemo and herceptin but it had completely disappeared probably June last year. I started another her2 target drug last October (neratinib) and the PN unexpectedly returned in February. I’ve been told that side effects can reappear randomly. Guess it’s just pot luck what ones you get.
Hi Kali - I have been having Herceptin and Perjeta infusions 3 weekly for over 2 years and have PN in my fingers and numb toes. I started with Taxol but couldn’t tolerate it. I tended to think the Chemo had started it off but it’s still the same now. I was also prescribed Letrozole tablets, but I started getting ‘trigger fingers’ which my Onco said couldn’t be caused by the tablet. But I did research and stopped it and my fingers are a lot better although still have PN. Damage has been done though and I’ve had to buy magnetic fasteners for necklaces as can’t feel to secure ordinary clasps anymore. Must be awful for you having PN in your tongue too. I’ve just searched and it’s one of the most common adverse reactions of Perjeta and Herceptin. Just put ‘Any links between Perjeta and Peripheral neuropathy ‘in search engine and it comes up. Hope this helps - sorry I’ve gone on and on - yawn x
Hi Kali,
I just saw this post.
I was diagnosed with stage 4 breast cancer 3 years ago. Initially I had Taxol infusions every week for three months and Herceptin and Perjeta every three weeks. I had some neuropathy in my feet and fingers from Taxol, but it stopped getting worse after the chemo ended. However, after about 6 months it got gradually worse again. I have continued Herceptin and Perjeta every three weeks until 4 weeks ago when my oncologist suggested I have a three month break from my treatment. By then I was in so much muscle pain (legs in particular) and the neuropathy in my feet (and also legs and thighs) kept me awake at night as well. Walking is painful. When I saw my oncologist I was so week I could hardly walk 10 meters before I had to sit down. There is nothing wrong with my heart ( it has been checked regularly) , but the general stamina of my body is very low. Even though I have persisted walking for at least 30 min every day (ever since I got diagnosed 3 years ago). I have asthma as well, so walking is important for my lung capacity. I am better now that I am not having treatments, and my oncologist agrees with me that it is the Herceptin or Perjeta that is causing the neuropathy. And if you look it up on Roche, it says neuropathy can be caused by both. Hope you are better!