Herceptin side effects

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HI.

I had a lumpectomy and lymph nodes removed Jan 2021. I then had 3 doses of EC chemo followed by docetaxel. I suffered awful pains with the docetaxel and my last session was cancelled because my finger tips were painful and the nerves were being affected. The oncologist decided my body had had enough. I then went on to have radiotherapy in August.

My herceptin injections have been ongoing every three weeks. I only have 3 more to go.The tingling in my hands and souls of my feet have been getting worse as time goes on. I don't mind and can put up with it as long as the pains leave once the treatment is complete.

My concern is what is the likelihood of there being permanent damage?

My oncologist said at my last telephone appointment as long as I can put up with it then we shall keep going. But at what point should I speak up and say that it does keep me awake at night. There are times when I experience shooting pains suddenly in my toes and feet. I even, at times, am beginning to think that my lips are starting to tingle now, but perhaps that just me overthinking everything!

Any advice would be greatly appreciated

Thank you

Suz

Emma B - Macmillan over 3 years ago

Hi SueH,

Thank you for getting in touch. My name’s Emma, I’m one of the Cancer Information Nurses on the Macmillan Support Line. Welcome to the online community. I see that you have joined the breast cancer forum and hope that you find it helpful.

I’m sorry to hear that you have been experiencing tingling to your hands and soles of your feet which is getting worse.

Both Herceptin and Docetaxel can have the possible side effect of tingling in the hands and feet, which is also known as peripheral neuropathy. It is important that your symptoms are being assessed and monitored with each cycle of your treatment. While it is good that you have already made your oncologist aware of this, it is important that if your symptoms are changing, or indeed worsening, that you inform the chemotherapy unit or your treatment team, and to do this as soon as possible. Your team will be able to review your symptoms and how to manage these, as well as how to prevent further damage. Sometimes this can involve a reduction in the dose of your treatment.

Most people will find that after treatment the symptoms of peripheral neuropathy improve gradually over time. Unfortunately, for some people the damage to the nerves can be permanent. While there isn’t a treatment to reverse the damage that has been caused to the nerves, there are ways to help support you in managing the impact of these symptoms which your doctor will be able to discuss with you.

You could ask your doctor whether it would be appropriate for you to see a neurologist, as they can carry out investigations such as a nerve conduction test to assess the level of damage to the nerves. There can be a wait for an appointment.

I hope you find this information helpful. Please don’t hesitate to get in touch if you would like to speak with us again.

Best wishes

Emma

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7days a week from 8am – 8pm) or email us.

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Herceptin side effects