Immunotherapy related pneumonitis

Hi DashHound 

I'm very sorry to read that you have recently lost your mum and I know how devastated you're probably feeling.

I don't have any experience with immunotherapy related pneumonitis but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I can see that you're also a member of the bereaved family and friends forum and it might be an idea to post your question there as well.

Another thought is that if your mum was still being treated for TNBC before her death, you could maybe request an appointment to see her consultant/oncologist/breast cancer nurse specialist and ask your question directly to them.

((hugs))

First of all I am sorry to hear you have lost your mum. Major immunotherapy related adverse events are supposedly rare, but there are a few people on the site who have had them, including me. I have metastatic TNBC, PD-L1 positive, and was treated with Pembrolizumab. About 6 infusions in, I started to show signs of kidney nephritis and thyroid failure. I was treated with high dose steroids and thankfully survived it, although it took 9 months of steroid treatment. During the steroid wean I found I also had pneumonitis. It was also improved although I have been left with a range of physical impacts. 

So sorry to hear about your loss. That must be really tough for you and your family.

Immunotherapy-related pneumonitis is a rare side effect, but it can be severe. Did the doctors mention any signs or symptoms that might have indicated this earlier on?

My dad would go with her to the appointments and all those sorts of things. I can't answer this question because I don't know. I was only told what I needed to know as my parents protected me a bit and also I didn't want to know too much. 

She had breathing problems I think maybe a month before she was admitted to hospital. That's all I can say really. 

Hopefully your dad will know more about what happened in the time leading up to your mum's passing.

I know it will be difficult but perhaps now is the time to sit down with him and ask about all the things you didn't previously want to know about.