Serious immunotherapy adverse event - Pembrolizumab

Living with secondary breast cancer Treatments and medical issues
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I have been fairly quiet on here for a while. I was about 5 months in to being treated with the immunotherapy drug Pembrolizumab, a PD-1 blocker, for PD-L1 positive TNBC metastasised to my liver. Unfortunately I then suffered a serious adverse event almost a month ago, where the treatment allowed my immune system to go on the attack against organs normally protected by the PD-1/PD-L1 pathway.

Net net, I ended up with nephritis of my kidneys, serious enough that they feared I would go into renal failure. I have lost all my thyroid function. I am being managed through a very high dose steroid step down plan, to reduce the inflammation in my kidneys, and see how close to my baselines I can return. This is about 10 weeks of rarely sleeping, and a load of extra risks. It would appear I am back from the brink, but it’s not clear how well I will recover.

A very rare side effect. I went in in full knowledge as it was the only treatment that could possibly have put my particular cancer into a durable remission. No regrets, enjoy each day as it comes

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Hi Coddfish,
Sorry to hear you’ve had to stop the pembro; the adverse reaction you had sounds awful and very scary. Keeping fingers crossed that you can make a full recovery from that.
Have they said how long they think you’ll need to stay on the steroids?
Hope you are managing ok and not in much/any pain.
Lisa x

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It’s a long slow wean process, where I need to be down to 10mg a day or less within 10-12 weeks of this starting. No timetable as such, and it’s possible I have to stay on a low dose permanently. Stepping carefully through blood test by blood test, but underneath it I feel a lot better, it’s just the effect of the drugs now.

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Hi @Coddfish, we’re here if you ever need to talk anything through!