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I had my first ipi/nivo infusion two and half weeks ago. The last few days I’ve had a persistent, while head, headache. It is worse when I get up from lying or sitting or bending over. I’ve spoken to nurse and doctor who said to go to emergency if it gets worse or I am vomiting. It doesn’t sound too common though. Have others had this? How was it resolved? I’m just so tired of the pain! TIA
Pituitary swelling can cause bad head aches, usually requires mri to see the swelling can be easily resolved by hormone replacement. Thyroid can also be out of wack as well and would show up in blood work!!!
What Ed said! Myself as well as several others here have had this side effect. For some it starts mild and slowly gets worse and for others it comes on fast like you got hit by a 2×4. Mine had gotten really bad when it was finally diagnosed and within about an hour or two of taking the prednisone the pain was gone. Not 100% saying this is what you have but I highly recommend you call your oncologist office again and tell them you suspect you have hypophysitis. I’m not optimistic an emergency room is going to be familiar with this side effect if that is indeed what you have.
Thank you so much for the replies. It got worse today and nothing helped. I’m in emergency now but I’m going up to oncology for mri. Knowing other people’s experience is helpful and that the pain will (hopefully!) end!
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