I hope those of us who want to chat about our decisions, experiences and anything else regarding not having treatment, can do so here. Those who respect our decisions are obviously welcome.
Thank you EllieKate for you kind words, I do hope you get to your daughters wedding and a lot more, I have grandchild No 8 due in July who i hope to hold just once, take care.
Hi Elliekate, I understand why you changed your mind about the treatment. Your daughter obviously made you feel guilty about not taking the treatment because she wants you to be at her wedding! I'm sure you will be there! It is not as far away as you think. All you have to think of is how quickly the last year seemed to pass and it seemed to go passed in a flash! I think if there is something to look forward to, like a wedding, a birth, a special birthday etc it can make us tolerate things we didn't think we could, we do it for our loved ones!
In saying that, I hope the months to come are kind and the only thing you have to worry about is what will you wear!!
Love Annette x
Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
Your decision has come as quite a surprise to me, as you have, until recently at least, always been enthusiastic about Novilumab.
I too have had two very rare adverse events, one of which has given me a permanent life-threatening health condition, known as Addison's disease. I continued with the Nivo until I had the second event, when I decided to turn my back on immunotherapy. My husband hasn't been happy about my decision, but knows he cannot force me into having more treatment, and more risks of side effects.
My scans show that my immune system is still holding the cancer at bay. I hope that continues!
Incidentally, my oncologist said that they really aren't sure how long people need the treatment for, and whether continuing on it for years is really necessary, or beneficial. They feel obliged to keep people on it, as denying patients the drug that is controlling their cancer is questionable. Quite a dilemma, and an expensive one!
Since stopping my treatment back in August last year, I have felt much happier, with no fear of nasty side effects, and the most important thing for me, feeling that I am in control of my life again!
I hope you continue to feel comfortable with your decision, and you continue to have the best health possible!
My own views on checkpoint inhibitors have changed too. As you know, I have had extensive consequences from my own adverse event, which are still ongoing. I also haven’t got completely off the steroids they used to manage my issues yet. For a long time I wanted to restart immunotherapy, but the continuing emerging issues and the then steroid load made that impossible.
The immunotherapy worked wonders on my cancer and left the residue in a largely dormant state for the 6 months between stopping treatment and being well enough to have it ablated. I am fairly certain I would have had a complete response if I had been able to get a couple more doses in.
Very much a blunt instrument and I suspect it’s safer to get off them - I certainly wouldn’t stay on one beyond the point of total response
I only have 1 more line of treatment available to me (Trodelvy) which has a brutal reputation. I am not sure whether I want to go on it when the time comes. It’s possibly a life extender but doesn’t have the possibility of durable remission that Pembrolizumab had (or that continued ablation has). Equally this second ablation has been seriously painful. Hoping it’s a while before I have to make a choice.
