Immunotherapy

Hey my mum has been having pembrolizumab since April this year alongside chemo. She is getting on ok with it. Are you having it? 

Hi Lujo

I've been having prembolizimab since last August. So every 6 weeks a one hour drip is so much nicer than the chemo and radiotherapy. The only side effects are dysentry and terrible fatigue after treatment - but the doctors seem really happy. 

I think you can have the immunotherapy for 2 years and then it becomes less effective. 

I hope your mum doesn't have too many side effects and wish her well please. This drug really is good stuff 

Regards Simao

Hi Simao I am glad to hear you are getting on well with the immunotherapy. I just wanted to put your mind at rest over your comment about having treatment for 2 years. It is stopped after 2 years because after that time your immunity has done what it needs to do to fight the cancer cells, and it continues to do this well after the treatment has stopped. It is not that it becomes less effective, it’s that it has changed your immunity enough to continue to do the job. I hope you continue well on your treatment. 

Thanks Chelle

I'm living and getting treatment "abroad" and its tough love here. You get maybe 5 minutes with the doctor every 6 weeks. And pray its not a locum. Blood results....what painkillers/steroids etc do you need and how are you doing? Then its treatment. Obviously this all takes 8 hours because it's so busy and they're trying to help 200 people every day. We all get 5 minutes with the doc. 

It has been brilliant to be honest. But very different. I'm due my next scan in April so I consider that amazing from where I was 2 years ago. (Wheelchair + hospital bed + nappies) 

Thanks for taking the time

Regards Simao

Hi  my  mum has stage 4 non small cell we got diagnosed  july this year  mum couldnt have  any surgery as she has 5cm  tumour and  it already spread to lymph nodes 

mum had 1 cycle of combined immuno and chemo back on  8th sept  and has had  5 hospitalisations since  due to infections and side affects  we had 83 days after treatment and 45 were spent in hospital 

mum since has come home and decided against any further treatments  and we are  now  enjoying having mum home and  letting her  life her  life  to the max we have  no idea how long she will have with us 

i thought id reply as im being  open and honest but everyone is different and reacts differently some people sail thru some struggle it just sad that  mum has reacted to it  but we knew this could happen  and  took the chance  

mum had a combined  treatment carboplatin pembrolizumab and pemterexed 

hopefully you will be good and  not have any  issues  -  wishing u lots love luck and well wishes 

I am similar, stage 4 palliative now,  Pembrolizumab is an possible extender but i too have chosen home, and DNAR.  

its so  tough on the body and hard to  see when i see  my  mum in pain  confused with a high fever  swe too have a DNR in  place  - i want  nothing  more than  mum to be here forever  but then seeing her unwell  etc is  harder  

hopefully more memories are  to be  made ........sending u lots of  love prayers  and well wishes