Hi All I had my last 5th infusion for immunotherapy about a month ago . I had my scan and unfortunately my liver tumour has grown from 170 mm to 200mm which isn't good . The Oncologist asked me how I was and I said I felt rubbish and we agreed to stop that treatment , I have had Chemo twice but this has really wiped me out for the last 5 months. I use to walk 3 to 5 miles everyday but this has zapped me like never before. I am dealing with the side effects like swollen tongue and not being able to swallow correctly. I am in hospital later for x ray etc . The Oncologist is going to see how I am and decide if it's worth doing Chemo again . His concern is he doesn't want to put me straight into hospital . I still dont feel myself and havnt for 5 months . Without treatment he said it would be very quick maybe 3 to 4 months . I really can't be dealing with being ill for the time I have left as the side affects can be bad from this drug . Obviously any treatment is better than none as I am fit as a fiddle otherwise . I suppose the question for the Oncologist is if the drug worked how long could it prolong my life. I am not one for taking the easy route but signing up for more sickness maybe for no gain doesn't sound appealing . I know its down to me at the end of the day but even feeling normal for a while would be lovely , Thanks for any replies
I am really sorry Minmax. I wonder could you have the chemotherapy at a lower dose? I had a hard time with my chemo then they reduced dose to 80% and it made a massive difference on the quality of life.
sending you hugs
Hi Stella2020 Now that isn't an option I considered. I am just getting shot of my lung infection and my nose which has been sore for 5 months is on the mend . Mad as it sounds one thing goes and something usually takes its place lol . All the Best Minmax
Hi Minmax, I understand what it's like when the options seem to be running out. If my immunotherapy continues to cause problems, they may offer me a combination of chemo and immunotherapy at altered doses, purely chemo or just palliative care. I will wait for the precise options and weigh them up before deciding. I wish you all the best with your treatment decision. Italy sounds good and something to look forward to.
Patrick xx
Hi Minmax
I don’t have advice but just wanted to reach out. It’s a decision many of us will have to make eventually and I am sorry you are facing it so soon. It’s perhaps important to understand whether the treatment is having benefit or not. If not, it’s straightforward to stop, although not straightforward to decide whether to accept any more treatment lines that may be open to you.
Thanks Gilpat the clock is ticking and I will be sitting in that office this week and have to make that decision. I am not even feeling myself really and the idea of starting chemo just doesn't sit right with me. They have mentioned issues with my swallowing and eating which will probably get worse which kind of blows Italy and other ideas out the window. I feel fortunate that I am still mobile etc and fairly healthy , bar a 200mm tumour on my liver , All the Best Minamx I hope you get some good options
Hi Coddfish The immunotherapy treatment isn't working after 5 months and I have been slowly feeling worse since November when I started , I use to walk 3 to 5 miles everyday without fail , now am house bound due to lack of energy really. My life is going to sofa to bed and doing chores in-between , Dont get me wrong that isn't a problem but feeling ill on top of that and not being able to eat and drink doesn't help . If anything it makes me want to skip treatment so I can at least feel normal for a few months. The Hospice woman rang me and would like to see me on the 29th . I wanted to put that off for as long as possible. On a plus note both my kids understand if I dont want to carry on which is good . All the Best Minmax
Thanks tvman Agh dont be sad we all have to go at some stage. The clock is ticking and there is sod all I can do about it , Thats the bummer bit. I am very reluctant to throw the towel in but I'll be damed if I spend the last few months of my life being ill in hospital . All the Best Minmax I would prefer all my tumours just to FO lol
Thinking of you Minmax this is a very tough decision, quality over quantity. It is a very personal choice, and having been through something very similar with my mum, I know that decisions can change right up until the day of the appointment to discuss it. Once you hear your options, I think it will become clear for you, and you will know what is best for you. X
Hi Chellesimo Thanks . I just got off the phone to my parents and had a good chat about everything. They told me about my cousin who gave up treatment as it was making him so ill and he actually lasted a year. I just dont want to be feeling ill anymore and would love to be my normal self . I just remembered I have 2 tumours on my liver which puts the percentage of success even less. I suppose it's nice to have everyone prepped for the outcome which I dont think will be good. I am fine with whatever the oncologist says as it's out of all our hands. My mum suggested leaving it until I felt better before I make a decision which isn't a bad idea except it could be too late . All the Best Minmax
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