Hi - reaching out and desperate. My mum 77 was diagnosed for a second time with TNBC which has metastasised to her brain. Same cancer was treated 12 years ago but she developed sepsis during chemo and could not complete the treatment after the third round.
Fast forward to now. Our neurosurgeon and oncologist are at odds. Oncologist said palliative only but neurosurgeon happy to debulk/remove brain tumour. Mum had surgery this week and now we have been told to wait 2 months to come up with a plan to treat primary site.
I don’t want to wait I want to explore options now as mum wants to fight bless her and not be written off. What clinical trials, immunotherapy treatment do you know of that is worth pushing for? Has anyone asked for a second opinion? Any specialists recommended? Any help would be really appreciated.
Love to all affected by this monster. X
A proportion of TNBC tests positive for something called PD/L1 and can be treated with an immunotherapy called Pembrolizumab. It might be worth asking if your mum has been tested for PD/L1? I don’t know if it works through the blood / brain barrier as my metastasis was to my liver.
Thank you so much for taking the time to replyi - I am so sorry that you are on this horrid journey. I’ve been reading up on Pembrolizumab as it does seem to be readily prescribed for TNBC and a variety of metatastic sites. But I’ll ask specifically about the protein. I‘m picking up general feedback that side effects are relatively “better” than other options. I do hope it is working for you. Take care.
Hi Bunty
I am no longer on it as I had a severe adverse event on it where my immune system damaged my kidneys, thyroid and lungs, but it did put my cancer into remission. I did make a good recovery from the additional ‘damage’ but it needed 9 months of steroids to sort me out!
These types of side effects are supposedly rare. If it turns out your mum is eligible for it, feel free to ping me. I have no regrets taking it.
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