Pembrolizumab (immunologic) - any asthmatics, allergy sufferers, etc? (And other general irritated body syndrome bits.)

Hi Ursula I have not had this drug…… but if you put Pembrolizumab into the search tool near the top you will bring up many posts about people’s posts about this drug.

Hi Ursula 

I have had this drug and I can tell you a bit more about how it works and my own experiences of it. I can’t offer any view of whether or how it might interact with your existing conditions, but an understanding of how it works might help you find the right questions for your oncologist. 

I was treated with it in 2023 for metastatic triple negative breast cancer. It worked well for me, in that it has put me into a remission that has remained stable since stopping treatment. Apart from a clean up ablation on the residual liver tumours (probably just scar tissue) in February 2024, I haven’t had any cancer treatment of any type since. It did however cause issues after about 5 months of treatment and these were severe enough to mean I was recommended not to have any more doses. This was the result of what is medically termed an immunotherapy related adverse event, where my immune system damaged my kidneys, thyroid and lungs. These needed 9 months of treatment with high dose steroids to return me to almost where I was before. 

The drug is a PD-1 inhibitor. PD-1 and PD-L1 are proteins that bind together to put brakes on the immune system. This is the mechanism our bodies use to create safe zones around critical organs (like my kidneys, thyroid etc). Both your and my cancers have PD-L1 on their cells and are using the PD-1 / PD-L1 pathway to hide from the immune system. A sort of Harry Potter invisibility cloak for the cancer. Pembro inhibits PD-1 so makes the cancer visible to the immune system. Because it works systemically it also allows takes the brakes off the immune system generally. So if you respond well to the drug, as I did, it might also generate some other issues. 

Like you, I didn’t have other options available to me and I am delighted to be a success story. If you go for it, you will be closely monitored. The key is to react quickly to anything that seems off as IRAEs can come on quickly and need fast attention with steroids. 

Thanks. Once upon a blue moon, I kind of understood this immunology stuff; the kind of blue moon which wasn't actually discovered back then, mind you!

Glad to hear that it worked for a while for you, and that the steroids eventually pulled things back (I lived on those as a kid!) Right at the moment, I'd take those 2 extra years plus, with added steroids and 'shielding' if need be, as long as I can still have some quality of life.

Remission sounds like I word I can't even dare dream of hearing at all right now: and a different cancer for me, of course (primary lung), and more widely spread.

So it's only fingers crossed, but some hope? Closely monitored - I hope so. Quick reactions to any problems, and trust that the doctors can keep things in reasonable check. Drugs in general I am used to stuffing into the poor old (not so old, really) body already. 

Life will change: but I'll take that too, to a reasonable degree, I guess. No choice, as you said. Create some new adventures. The joy of new experiences ‍

Got a phone call booked with the  oncologist tomorrow. Just our second contact, almost seemed on the first visit that I was given the "this is our protocol for how we'll treat you" speech, and that was that. A lot of questions on my side now, obviously.

She seemed more worried in case I have an auto immune disease, which I don't, and whether it would cause Fibromyalgia flares or eczema than the lung issues - which is not what the papers which she gave me said!

Thanks.

I think a key one would be to know whether the PD-1 / PD-L1 pathway is involved in any of your health issues. If nothing else I would love to see her face when asked! I think that’s why she is probably concerned about auto immune disease.