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Immunotherapy - Permanent Side Effects

2 replies

Iwanttoliveinagardencentre · 01/11/2025 08:44

I had a year of immunotherapy (nivolumab) in 2020 for melanoma. It saved my life (stage 4, still in remission five years on) and I am hugely grateful.

However, I do have a variety of permanent side effects some common and some supposedly rare.

I wondered what permanent side effects others have had?

Or any new health issues which you wonder might be due to immunotherapy?

I have colitis , which is very common.
Thyroid issues, also common.
Tinnitus , rare.
Eye issues, also rare.

OP posts:
kaylot · 01/11/2025 08:58

Im on this as well as ipilimumab. What eye issues do you have? Im a bit blurry plus dry skin on eyelid. Im struggling with these drugs so bad but I need them

Iwanttoliveinagardencentre · 01/11/2025 21:05

I had a storm of flashes and floaters, and a change in vision and temporary pupil size change which was all very frightening and was thoroughly investigated for any other causes.
Has settled now but my eyesight is not quite as good as it was.
Ipi and nivo in combination is harsher mix than single nivo but very effective.
How long have you been on them and how much longer do you have to get through?

OP posts:
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