Light sensitivity in eyes and headaches on immunotherapy - ipilimumab and nivolumab

Marduk 

Hi Susi

Your side effects sound very unpleasant and I wish I could offer some tips but haven't experienced this myself. I have searched the group for previous threads which mention "light sensitivity" but drawn a blank I'm afraid.

I do hope the hospital can get to the bottom of what's causing this.

x

I have stage 3 melanoma and have had 4 rounds of ipi and nevo. 3 weeks after my third round I thought I had strained both eyes. Went ahead with 4th round and next day right eye was better and left eye was worse. It’s been 9 days of all the symptoms you have mentioned. I have tried everything. Excedrine migraine just might be the best relief so far. 

Hi Susie,

yes I experienced this also, had horrible headaches for almost a month went to bed with it & woke up with it… I had an mri & my tumours were stable so I made an appointment to have my eyesight tested & this showed my eyesight had deteriorated hugely in the past 18 months since my previous eye test.

I’m now wearing glasses for both long & short distance and my headaches are gone ! I also got anti glare lenses & which has hugely improved my sensitivity to light.

ive had 4 ipi & nivo treatments and 8 nivolumab maintenance treatments so far 

wishing you all the best hope this helps you in some way.

Alli x

Omg this is same as me! Only one round of the two immunos but my vision for reading is GONE! I’ve had 20/16 vision my entire life! I can see around corners! Now there’s a white haze over all things bright and I’m wearing readers to use my phone. I wake up with headaches in lower back part of head/upper neck. 5-6 days now. Took half a prednisone last night before bed and woke up without a headache this morning. Was glorious. But it’s crept back in today. Nonstop. Aspirin helps for a bit. It’s not a migraine. It’s a more mild but constant headache. Going to mri next week just to be sure. But my nearsight has deteriorated OVERNIGHT! I hope it goes back to normal after treatment! Hope yours is better now!