Hi, has anyone suffered with severe neuropathy from having immunotherapy drugs, Herceptin and Pertuzumab ? I have had numbness and tingling in my hands and feet for a while which are getting worse and more recently I have started with tingling in my tongue and lips. I have been on the drugs for 5.5 years and am considering stopping treatment as I’m scared my symptoms will get worse.
Hi Angelk and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I can see that you also posted this in the Ask A Nurse section of the online community. I hope you've seen the response as the nurse has said
"As you are having immunotherapy you should have been given a 24-hour emergency number that you can call to get an assessment. If you don’t have this number, you should get an urgent appointment with your GP.
If you cannot get an urgent GP appointment today, then you need to contact NHS 111 immediately."
Clicking here will take you to the whole reply from the nurse. I hope you did manage to get checked and that everything's okay.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
