Mum is starting on third line Docetaxel. She has the cough, on steroids for it, but otherwise still looking seemingly ok, albeit a little more tired which could be due to the cough. She still gets out for walks, looks after my 1 year old, he’s a handful! Mentally, she is struggling with the fact her last treatment stopped working.
Today her new doctor phoned and told mum that “you know this is third line” and good luck with new treatment. Mum said her tone was very much as if this was last chance saloon. She said the doctor didn’t give her any reason to feel hopeful. After the call, mum asked me if she was going to die. She’s now convinced that the treatment is very unlikely to work. I said that the doctor would not put her on a treatment which is certain to fail. But it’s very difficult to give comfort. She’s convinced there is no other treatment options.
I feel so helpless, no one has a crystal ball but to keep positive and live each day as it comes is so important.
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LewLew19
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It's understandable for your mum to feel that way but many patients were told they were on the last known treatment second and third line some time ago then new agents were approved from new research and they were offered these... sometimes on clinical trial, other times when they quickly became standard of care as they were superior to other treatments. never give up..... the number and variety of treatments available now bears no resemblance to the time of my diagnosis in Jan 2011 or even those on offer 5 or 6 years ago. You're right.... if there was really no hope, the doctors would not offer the treatment but they equally cannot predict those for whom treatments work better than others... as is often the case with immunotherapy. I sometimes wish they'd be a bit more thoughtful in their language/communication as for them, they deal with it everyday but for each patient, it's their whole world and future at stake. A few years ago immunotherapy wasn't used at all for lung cancer then it came along for some patients and some of those had marvellous response - others didn't, some had side effects, some worse than others. Due to covid 19, more patients have been offered immunotherapy who wouldn't have qualified previously and more patients have been offered oral chemotherapy/targeted agents rather than going to hospitals for infused chemotherapy so this may also change results.... but nobody can know how until imaging or other tests are done down the line. I'll keep everything crossed for her that it works.... and in the years since becoming involved in research have met many patients and survivors who were told there was nothing more that could be done and some of them have survived much much longer than they ever expected.... good luck to you both.
Thanks as always Janette. I told mum to take things one day at a time. No one has a crystal ball and we still have a treatment which she’s never had so who knows.
The doctors are quite matter of fact about things, I guess that’s understandable. However because the now pass this information via telephone I think they could be a little more thoughtful and try to give some reason to be positive. The call lasted 30 seconds but my mum has spent hours stressing about it as a result and is convinced it’s not going to work. It’s a difficult situation, but I have hope. Firstly that the treatment does the trick and isn’t too harsh. Secondly that mum continues to be able to live and be well to do all the day to day things she’s been doing. Thanks again for your kinds advice and words of encouragement. X
Their communication is always 'clinical' i.e. matter of fact and sometimes even cold to us - I struggle sometimes with emails from clinicians as to me they border on the 'curt' but then I'm very 'wordy'....! I agree it's worse when not in front of somebody and just hearing their voice.... something clinicians need to consider with this move to telemedicine which may suit them better but needs some honing of communication skills on their part. When I studied counselling and coaching and had people who became a little stuck in their thoughts, gentle probing may unravel exactly what the issue is with your mum..... treatments aren't even licensed to be given unless they provide positive results in patients, the NHS doesn't waste resources or patients' time if there really was no hope.... and would move into palliative care services which they haven't.... but one thing I've learnt is that we all take different amounts of time and different ways to come to term with our situation and some techniques will work for some and not for others..... hope her mood/hope lifts soon and as you say, that the treatment isn't too harsh.... take care x
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