Mum is stage 4 NCSC and soon to be starting on keytruda. It’s an odd ‘in limbo’ time as the words of the doctor saying the chemo hasn’t worked are still ringing. That combined with a new treatment which we will need to wait 3 months to see if effective. Mum is really anxious.
Physically, mum is doing well. She’s able to get out and about. Go for walks. No breathlessness. Mentally however, is a different matter. She’s really struggling to sleep which is exasperated by the anxiety she feels.
We’ve been to the GP and they placed her on antidepressants which caused various side effects including lack of appetite which mum can’t afford (she’s very small naturally and the cancer team are worried of weight loss). She asked for diazepam which she has but that doesn’t fix the problem. She takes sleeping pills but wakes up after 3 hours. Then she feels down in the day. It’s a vicious cycle.
We asked the cancer nurse about counselling and have to wait 4 weeks. They also said go to GP about the sleep but her one is useless.
I feel that when she starts treatment, at least she can know what to expect - hopefully it will be easier on her than chemo.
Sleeping really is the key here. When she has a good night she’s a different person.
Does anyone have any tips?
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We've used a medicine called Trazadone which works great. It is classified as an antidepressant so it takes a few nite's before it builds up in ur bloodstream to
Hi I can really relate to your mum and lack of sleep. I was diagnosed Stage IV NSCLC with brain and adrenal mets last October - I’ve always only needed 5 hrs but have really struggled to get anything like that. I have tried lots of things but still hit and miss for me. I started Keytruda last November and have had really good results and this has definitely helped me mentally. Has your mum spoken to her doctor about a short course of sleeping tablets to get her sleep pattern back? Wishing you and your mum the best of luck with Keytruda. x
Hi there, thanks so much for your kind words and advice. Sleeping really is proving to be an issue as it seems to affect everything, her well being, health and mental ability to see things positively. She has sleeping tablets but says they don’t work well for her. I personally think she’s not taking them as often as she says. Mum has always been one to avoid taking medication like that where possible. She’s seeing the cancer nurser today for her pre bloods ready for first treatment on Monday. I’m really hoping the treatment and her knowing what to expect calms her down so her sleep in turn may improve. It’s all been since her doc meeting when he said her chemo didn’t work. It’s set her mind racing! Thanks again. All the very best to you, stay well x
I am really sorry to hear about your Mum’s sleep problems and anxiety. I was diagnosed with stage 4 nsclc and bone mets in February 2016. I have had radiotherapy, chemo and am two treatments away from competing two years on Keytruda. The chemo made me very ill but other than extensive eczema when I started Keytruda, which was sorted with oral steroids, I have not experienced significant side effects on this treatment. In fact I have been able to do a lot more and it has kept my disease stable. I hope this gives your Mum some reassurance. I only carry the PDL1 expression at 5% so feel fortunate that I have had a positive response to the Keytruda.
I appreciate it is difficult not to worry and that obviously impacts on sleep. On YouTube there are some sleep meditations, sleep hypnosis sessions and adult bedtime stories which can be helpful in getting to sleep.
I try to do what I can to help myself. I try to eat a healthy diet but allow myself a few treats, I find reflexology beneficial, have recently taken up Pilates and also singing, which of course helps with breathing too. I have become a reiki practitioner and use this on myself every day. Our local Hospice offers various complementary therapies and the same may well be true for yours. I think taking what control one can in the situation by doing what one can to help one’s self helps reduce anxiety. Obviously any complementary therapies that help relaxation can only be beneficial and it is a case of giving them a go and seeing what suits. Spending time with family and friends is therapeutic too as is having little treats planned to look forward to.
Wishing you and your Mum well with her treatment starting next week. Hope it proves very successful and she tolerates it well.
Thanks so much for your kind words and tips. It’s so amazing to hear of your success on this treatment and I really do wish you all the health and happiness in the future. Mum loves yoga which she’s been doing occasionally but I think investing some further time to cleanse the mind will help her with the anxiety - sleep merry go round we’re on! Thanks again x
Sleeping can also be negatively impacted by steroids, inhalers and anxiety - many of which apply to those waiting or in lung cancer treatment. Camomile tea? distractions so that cancer is not in her every thought and she has other things to think about. It sounds as if you may need support as much as her - Macmillan and Roy Castle have nurse led help lines and offer support so worth calling but I believe they only operate on weekdays. Waiting lists for IAPT/mental health counselling via the GP can be a long wait but if you explain the cancer situation, the lung CNS may know of other services - I was referred but only once I learnt about such services when I attended a Roy Castle conference in Oct 2012 (almost 2 years since my surgery/diagnosis Jan 2011) but did find it helpful and also had referral to complementary massage. At the moment, anxiety will be playing on both your minds so maybe having a look through (yourself) on the Roy Castle website with their information about the different treatment types and potential side effects along with good news/hope stories and questions you may wish to ask of the medical team. Not everyone has side effects and many live a lot longer than they're told or imagine if they can cope with the uncertainty and that treatments are being changed/improved all the time. Several patients I've met who had treatments now in standard care were on clinical trials and lived years. I've also met patients who were not on these new treatments and have survived 20+ years. Personally I'm almost 9 years out since my surgery. Don't give up and good luck to you both.
Thanks very much for the helpful tips and advice. Yes I agree, both mum and I need that support as it’s a lot to take on and deal with. I will make use of the helplines, especially as mum isn’t so willing to reach out - especially when she’s in a low mood. If I can find some information then I can funnel this to her when she’s happy to discuss things. In some ways I’m really looking forward to her treatment finally starting so we can put some answers to her questions, like side effects and how it differs to chemo. One day at a time! Thanks
That's the spirit - I'd suggest staying away from the internet/google as much as possible as so much information is outdated and therefore very inaccurate compared to availability of treatment/survival odds these days. I'm now heavily involved in cancer research (especially lung cancer) and frequently raise the importance of all the research studies publishing their results not only in scientific or medical journals (which they have to do for their career progression) but try and ensure wider dissemination. Unfortunately most clinically written papers from the research are quite inpenetrable in terms of their English which is why trusted websites like Roy Castle are so useful as they take the clinical/scientific elements from a panel of experts around the country, verify details with their own clinical director and have a panel of patients who review content to ensure it is understandable. All treatments affect people differently as so much depends on the patient's existing fitness, other conditions they may have and the specific characteristics of the tumour in terms of genetics/biology and mutation burden. If one lot of treatment doesn't suit, there are often alternative agents or different dosages or orders of combination of different treatments which is why it's really important to discuss any specifics with her clinical team. Hopefully it will become clearer but you have to get used to a whole new language, set of acronyms/descriptions which is why they're usefully defined within the Roy Castle booklets. There are a couple of books I'd suggest to you - one is 'what can I do to help?' by Deborah Hutton and the other is 'cancer is a word not a sentence' by Dr Rob Buckman that can help with the shock of it. take care.
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