Advice about immunotherapy

Hi Teresa. There are several different immunotherapy drugs and they work in different ways. If you can tell us which drugs you are having, someone might have experience. I had Pembrolizumab (Keytruda). 

Hello Teresa

I’m currently on a targeted therapy, bevacizumab, are you on this one ? 

Thanks that’s what I’m starting next week how did you find it? 

I’m going on lenvainib. Hope you’re tolerating your treatment 

Hope it goes ok for you . Side effects seem to vary quite considerably person to person . I’ve been mostly ok , aches and pains  and some fatigue but not too bad and can live relatively normally . Exercise helps me a lot ,both body and mind .  I’m not evangelical about my diet but try to be healthy most of the time - if I feel like crisps and a bottle of beer I have one life is for living !!!

Hugs 

Lucy xx

Thanks for reply and good to know you are tolerating it ok. I’m the same trying to be healthy but feel I deserve a treat in the hard days. Best wishes 

I had Pembrolizumab with nab-Paclitaxel for metastatic TNBC. I haven’t had lenvatinib. I went for about 5 months with no major issues, just the obvious side effects from the Paclitaxel. Then I suffered an acute kidney injury, lost my thyroid function, and had lung damage from an ‘adverse event’ as they are wonderfully called, from the pembro. Essentially my immune system had gone into overdrive attacking healthy organs. The good news is I have had no evidence of disease since stopping the treatment and having an ablation of the residual masses in my liver. Quite possibly they were just scar tissue at that point anyway. So it seems to have given me at least for now a stable remission. Careful management with high dose steroids enabled me to recover most of my kidney function. Now most of my issues are the result of 9 months of high dose steroids. 

The problem with drugs like pembro is that issues like those I suffered can come on very quickly and there’s little that can be done if it happens other than damp you down with steroids. There’s nothing they can do to reverse the changes pembro has made and it sits in your body for quite a long time after stopping treatment. i think it’s unusual to be as badly affected as I was, but equally it seems people who suffer these adverse events often do well. Presumably because the immune system has also been primed to address the cancer. 

Thank you for sharing. sounds like you had a tough journey but glad you’ve managed to recover somewhat best wishes