Immunotherapy side effects

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I am HER2 positive and have secondary breast cancer, liver mets.  I am currently on herceptin and pertuzumab every 3 weeks.  I have neuropathy in my hands and feet and more recently in my lips and tongue which is gradually getting worse.   Over the last 4/5 months I have noticed cognitive changes - I forget things, I misplace things, I am easily confused and also struggle at times to remember words I am trying to say.   Is this likely to be nerve damage as well or could it be something else I should be concerned about.   I was first diagnosed in December 2019 and had chemotherapy, surgery, radiotherapy and have been on immunotherapy for over 5 years. 

  • Hi Angelk

    Welcome to the online community. My name is Kathryn, I’m one of the Cancer Information Nurses on the Macmillan Support Line. I can see you have joined the secondary breast cancer forum. I hope you’re finding it helpful to share your experience with us.

    I am sorry to hear about your secondary breast cancer diagnosis and that you are struggling with the symptoms of peripheral neuropathy this must be very difficult for you.

    You mention that your symptoms are gradually getting worse, with any new, worsening or changing symptoms we strongly advise you to seek medical help straightaway.

    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. If you feel that your condition is ever life threatening, then dial 999.

    You also mention that you have noticed cognitive changes over the past few months. Although this could be related to the immunotherapy that you are taking it is important that you speak to your treatment team about these changes. They can assess your cognitive symptoms and carry out any tests that may be needed to understand what is causing these changes.

    I hope this information has been useful, please contact us whenever we can help. 

    Take care.  

     

    Kathryn

     

    Cancer Information Nurse Specialist  

     

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. Ref: KR/MD