TNBC immunotherapy a year on

Hi. Sorry to hear your mum is struggling with the treatment, that must be so frustrating for all of you.   I haven't had the same experience, but it might be helpful for you to have a chat with the lovely folks at Macmillan as they might be able to give you some advice.  You can call them on 0800 808 0000. Best wishes 

Thanks for taking the time to reply. X 

Hi, I haven’t really posted much just used this for advice really, but reading your story it’s almost identical to my journey for the past year. I really feel for you and your mum and I’m so sorry she is struggling after going through all the treatments. 

I’m 48 and was also diagnosed Tnbc in Jan last year, the same chemo and immunotherapy although I had a bad reaction to the immuno which caused damage to my adrenal glands. So it was stopped and just continued with the chemo, 12 weekly paclitaxel & Carboplatin then 3 weekly EC for another 4 sessions. 
Then I had surgery in Dec lumpectomy and 5 lymph nodes removed, radiotherapy in Feb this year, and then my oncologist asked me to try immunotherapy again, I was a bit dubious due to my previous experience, but as my oncologist said, the damage is done now, so it shouldn’t cause any more problems! 

 I’m only having 5 immunotherapy sessions once every 6 weeks, so not the 2 years your mum has been advised. 

i would definitely speak to your oncologist and ask if anything is showing up in the bloods,I was told the reactions to the immuno are rare but they do happen, I’ve been left with adrenal failure for life and have to take steroids to manage it. It may be that your mum has had a similar reaction to the immuno.

I really hope you get to the bottom of this asap and that your mum starts to pick up and feel better soon. hang on in there. 

love and hugs Sharon xx 

Hi Sharon, 

Thanks for coming forward and sharing your journey. It helps to know that you've been through the same. I feel for you all battling cancer.  

Immuno wiped out her 1 kidney last year which paused treatment for a while so we were nervous about having it again.  

I do sit in all the oncology appointments so I'll ask about the bloods before the next round of chemo. It's a shame her key worker never contacts her as she could have been supported a little better through this. 

Out of interest, did your oncologist explain what would happen if you didn't have the follow up immunotherapy? We didn't ask as we were shocked at the further 2 years.

Wishing you all the best with your continued treatment. Big hugs xx 

Ah you are welcome, it’s good to be able to share our experiences. 
my oncologist drew me a 5 year graph to show the benefit from having the immunotherapy and the difference in reoccurrence rates with having it vs not having it, and it was quite a big difference, he told me they have just released a 5 year report on the benefits of the immuno and that’s why he recommends having it. 
I really hope you can get to the bottom of this and your mum starts to feel better soon xx

I am in a slightly different situation as I didn’t have immunotherapy until I had been diagnosed with secondary cancer on my liver. Originally I just had surgery, chemo and radiotherapy for my TNBC. The plan was for me to be on immunotherapy (Pembrolizumab) for 2 years, with additional chemo for the first 6 months. After about 5 months I had what is known as an immunotherapy related adverse event, where my immune system did harm to various organs, in my case kidneys, thyroid, lungs. The event was serious enough to mean I couldn’t have any more immunotherapy. Before that I hadn’t had any side effects from it, other than one instance of a rash. 

My crisis was picked up through a pre-treatment blood test, before I had symptoms, and I was immediately hospitalised. My hospital has an acute oncology 24x7 hotline and they triage you and bring you in for tests if appropriate. If your mum has similar, I recommend she calls them.

Thanks for taking the time to share you experience.

Pembro did the same to mum's kidney and she had to have quite a few blood transfusions throughout treatment.  

She's due her next round on Wed next week so we'll see if the pre treatment blood tests show anything. 

Thanks again for replying. All really helpful. X