Pembrolizumab (keytruda)

Hi, unfortunately I don't have the experience you are looking for, but I did notice you've not had any replies yet. My answer will bump you back to the top of the list and hopefully someone with the right experience will be along soon. Best wishes 

I was treated with Pembrolizumab for about 5 months for metastatic TNBC. Not a young woman though!  I have had to stop thanks to a series of adverse events, having said that it did have a big impact on my cancer before I had to stop. My blog covers my experience of TNBC, the entries from around April this year all relate to my time on pembrolizumab. 

community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

Hi there, 

I’m older at 48, but i do have experience of Pembro immunotherapy, I also have triple negative and had what I was told is a rare reaction, my adrenal and pituitary glands no longer function, and i have to take hydrocortisone steroids 3 times a day, I’m told this will probably be for life, I also had an adrenal crisis in June and ended up in hospital for 2 weeks. I think from my own research that when this drug works it’s fantastic, however when it goes wrong, it really does cause a lot of problems. I’m still juggling my daily dosage of the hydrocortisone as you have to double dose around chemo and if you get poorly, I’ve recently had shingles, so it’s difficult to manage, with very little support from the endocrine team who are supposed to provide support. 
I hope this helps, please don’t let it put you off, but please consider all options, I wish I had done more research before accepting treatment. 
Ive just finished chemo and have had a total response as far as the mri goes, i had a wide local excision this week, and 5 lymph nodes removed, just waiting for my results now. Hopefully about 3 weeks. 
If you have any questions, please feel free to ask. 

best wishes Sharon x 

Thank you for sharing, and great idea to make a blog to document the process. So sorry to hear about the adverse events you’re suffering due to pembrolizumab, it sounds nasty. I hope you manage to make a full recovery soon 

Thank you for sharing and so sorry to hear about the adverse effects you’re suffering from pembrolizumab. I really hope they manage to get it under control for you. Fantastic news about the MRI though, and fingers crossed they find a total response in the tumour dissection - at least the pembrolizumab is good for that. Could I ask how many doses of immunotherapy they gave you before you had a reaction, or is it hard to tell when it started? X 

1. Ah thank you, yes of course, the first dose I was fine, I started to get problems after the second dose, but initially put it down to getting used to the chemo, after the 3rd dose I got quite poorly, and it was the 4th dose that really caused the problems that’s when I ended up in hospital, I refused further Pembro after that, but should have stopped after the second one in hindsight. xx

I suspect there’s a strong correlation between it working well on the cancer, and immunotherapy related adverse events. Like in your case, it worked very well on the cancer for me, but took out my thyroid and had a good go at kidneys and lungs along the way. I am also struggling to completely get off steroids. I wonder quite how rare these cases are in reality, as more and more people go onto pembro and similar drugs.  

I can totally understand how you wouldn’t be able to tell the pembro related symptoms from the general chemo symptoms, so It’s great that you realised and took control to stop further treatment. I read that risks of a serious adverse event is ‘less than 1 in 100’ which doesn’t actually sound that low! I feel fortunate that my oncologist has made me very aware of these risks before starting, but it’s so difficult to decide if the benefits outweigh the risks.. xx  

Thank you, im glad I stopped it when I did, it’s tough living with this juggling act on the hydro steroids, but it’s better than the cancer, so I’m trying to stay positive about it.
I hope your treatment goes well and all the best with everything xx 

Yes I agree, I have a friend around my age who also has TNBC and she also had a reaction to the Pembro, hers was similar to yours by the looks of it, affecting her thyroid and liver, I do wonder about these rare reactions and if they are noticing more reactions now than they originally thought! 
all the best xx