Encorafinib & Cetuximab worst headache ever

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Hi, I started these drugs with an infusion of Cetuximab on Friday pm and had first dose of Encorafinib Saturday am. By mid Saturday afternoon I had the worst headache (and I used to get migraines) ever, which persisted all through Sunday until about an hour ago when the headache calmed down a little but I now have very sore shoulders and right arm. Can anyone tell me this is going to improve as I go through the treatment? I understand I’m going to be on this for 6 months or until it stops working. I have metastatic colon cancer. 

  • Hi  

    I definitely think your team would want to know about this right away . It does not always mean you stop treatment . My mum had a slight dose reduction and this helped considerably. Took a lot of her side effects away .

    But I do think they like to make sure you are ok and would want to check you out . My mum was on Cetuximab for ten months and I know headaches can happen but at that level they will check you out .

    https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/cetuximab#:~:text=Headaches,your%20doctor%2C%20nurse%20or%20pharmacist.
    It does suggest here the team want to know .

    My mum had a few six week breaks due to side effects and they just sorted her out and back into treatment . They will have dealt with this a lot !

    They even sent a remote nurse into the general hospital to report back to her oncology team and reassured her she would be back in business soon .

    Let us know how you get on .

    Court 

    Helpline Number 0808 808 0000

  • Hi Court, Thanks so much for your reply. I did call the triage line early hours this morning to report the headache and was advised if it didn’t lift by 9am I should go in. Lo and behold at 8 it shifted to my shoulders and melted away. So far it’s staying away thank goodness. Your mum’s story is incredible, what a brave lady! Thanks again for the advice, take care.

  • Great news  . 
    One thing we did observe with this type of treatment , the side effects seemed to take turns then subside. Each cycle was a different one but did not seemed to accumulate like chemo . 
    Take care ,

    Court 

    Helpline Number 0808 808 0000