Headaches

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Hello,

I am on pembrolizumab and lenvatinib for inoperable kidney cancer. 

For the past fortnight I have experienced headaches in the back of my head. They vary in intensity and are sometimes hardly noticeable. 

I called the hospital 24 hour number last week about them. After questioning me they advised me to book an appointment with a GP and to stop the lenvatinib. 

I saw the GP last Thursday. He checked my balance and co-ordination. He found that my left shoulder and neck were quite stiff and concluded that this was probably causing the headaches. My fear is of a brain tumour but he dismissed this as I hadn't had fits or experienced numbness. I hope he's right. I had experienced dizziness that morning when bending my head to wash my hair which I told him. 

I don't know whether it's worth contacting the hospital again as I feel that I will just be sent round in circles and told to go back to the GP who will probably still have the same opinion.

  • Hi Vicki,

    I’m Sarah, one of the cancer information nurses that works on the Macmillan support line.

    I am sorry to read that for the past fortnight you have been experiencing headaches in the back of your head. This sounds a difficult time for you and understandably has caused you to feel anxious about a possible brain tumour.

    You did the right thing to call the 24-hour contact number when the headaches started. It is important on treatment that your team are aware of new symptoms. I can see that they asked you to stop Lenvatinib as it is a known side effect.

    We would recommend getting back in touch with your hospital doctor or clinical nurse specialist. This will allow time for you to talk about your symptoms, discuss next steps and ask about their thoughts on Lenvatinib. They have access to your notes including test results and would be able to give you the best advice. If symptoms change you will need to contact NHS 111 to be assessed.

    I can see that you have joined our kidney cancer forum and hope you are finding this a helpful place to connect with others.

    Please don’t hesitate to contact us if you’d like to talk things through. Sometimes it’s better to talk to one of our nurses so we can gain a better understanding of the current situation and give you the best guidance.

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Sarah

    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/KS/SS

    Sarah S-Macmillan Cancer Information Nurse Specialist