Persistent cough on keytruda

[LewLew19]

Hello, Can keytruda cause coughing as a side effect? Mums scans show reduction but she’s got a persistent cough that’s not too bad but definitely there and niggling. The issue we have is that she point blank refuses to talk to her doctor about it, it doesn’t bother her she says and I think deep down this is reminiscent of the cough she had prior to diagnosis so she worried something is wrong. We’ve another scan booked next month, but I wondered if it’s normal to have a cough despite treatment or if it can be a side effect.

Dad says it may even be aggravation due to pollen but it’s hard not to link everything to the cancer.

Hard not to worry something is wrong but she’s well and no other symptoms.

Thanks!

[Kayben21]

Hi there. Sorry to hear about your concerns. My partner started on Keytruda this week, so very new to this. As well as a cancer treatment log/tracker with information about recording any changes in health/side effects, we were given a chart to show main symptoms to look out for. We were advised to contact a 24 hour immunotherapy triage number for any concerns, not to wait. The chart indicates to look out for' I have developed a new or worse cough'. Do you know if you mum has been given an immunotherapy triage number? I dont know how involved you are able to be with your mums treatment, but if she has a folder with details, could you maybe help make a call to alleviate your worries. As mentioned we are only into the first week of keytruda as primary treatments, so not experienced at this, but I would try and work a way to get this noted. Good luck and wishing your mum well.

[LewLew19 in reply to Kayben21]

Thanks for your kind words and advice. Its a tricky situation, mum just will not make the call to her doctor and she is after all the patient. She has another treatment on Monday and she will have the nurse call her before so I guess we will need to see if she raises it then. She’s very stubborn and it’s causing her to completely shut down if it’s mentioned. I’d say she’s had the same cough throughout but sometimes it’s worse and more noticeable. Hope your partner is doing well. All the best

[Bettyblue54 in reply to LewLew19]

Hi there how troubling is your mum's cough? My husband has had 2 immunotherapy cycles and developed an awful cough which stopped him sleeping . I can't say if it is connected to the immunotherapy because obviously coughing is a symptom of this cancer. He is currently on oxygen as the cough and shortness of breath meant he could not breathe. His cycle of immunotherapy could not go ahead last week so we have a break now and will see how is cough is . Does your mum have shortness of breath associated with the cough?

[LewLew19 in reply to Bettyblue54]

Hello, mums cough isn’t too bad. It seems to irritate her more at night when she lays down but during the day it’s not really too noticeable. I only notice is more due to her diagnosis. She’s doesn’t have shortness of breath and so it’s difficult to pin what is causing it. Gladly she will be discussing with her doctor on Monday so we can try to manage it. I’m keen for her to mention it just in case she’s got an infection of some sort which they can treat.

I hope your husband starts to feel better during the break from treatment. It’s such a bumpy road to be on but you have my very best wishes x

[JanetteR57]

I had a lobectomy (surgery to remove half my left lung) in Dec 2010 and have had many incidences in the years since that reminded me of the initial ones that hospitalised me and turned out to be lung cancer. They have all been chest infections and one I was put in isolation in hospital in jan 2019 was a nasty virus. Not all symptoms are related to the lung cancer and usually respond to medication of antibiotics or steroids but are always worth getting checked out. One lot in Dec 2015 turned out to be pneumonia and one in June 2017 was an antibiotic resistant chest infection. It's very hard when symptoms overlap with lung cancer, covid 19 and many other chest infections not to think the worst especially if you've had a lung cancer diagnosis. However most of us had illnesses before and will continue to have illnesses after our cancer but not every symptom is related. I was at work and swimming 3 months after surgery but when I get these infections, I'm laid very low and extremely breathless with severe cough mainly at night.... but they have so far all responded eventually to medication. I found a book called 'cancer is a word not a sentence' by Dr Rob Buckman stopped me imagining everything was related to the cancer and really helped me not only put it in context but to look out for my own health and get any worrying symptoms checked out.... hope you can persuade her to seek help. My partner has recently told me that every time he hears me cough, he dreads that it's the cancer again - so it was bad enough worrying for myself but knowing it affects others, is even more imperative to get checked out to see what can be given to relieve symptoms. It will certainly help relieve the symptoms whether it's due to the treatment or some other cause. hope she's soon feeling better.

[LewLew19 in reply to JanetteR57]

Thank you for your kind words of advice. Thankfully mum will be bringing this up with her doctor on Monday as the cough isn’t too bad we hope that whatever the cause is we can solve or alleviate symptoms. I was worried that it would be something she leaves until it really is a problem. It’s coming up to her one year anniversary since diagnosis and the conservations we’re having are reminiscent of this time last year which is complicating matters.

She’s had a Covid test, so we know it’s not that but getting to the bottom of it is so important. Both for her physical health and also for her mentally. Knowing what this little cough is caused by will help her get on with normality! Thanks again

[JanetteR57 in reply to LewLew19]

You're welcome. It is really important to get it checked out - I know at the start I was also reticent and scared in case it was something else 'sinister' but also relieved how with the correct medication it improved no end.... I've had more in recent years (started quite a run in 2015 of infections and have learnt now not to take chances with my lung health - especially with having had half of one lung removed). When she is feeling better, keeping active (even gentle walking or movement can really help - even gentle activities with controlled breathing like yoga/pilates can regulate and strengthen breathing) is really important.... good luck to you and her.

[JanetteR57 in reply to JanetteR57]

meant to offer congratulations on her one year anniversary - rather than dreading each one, worth celebrating - my follow on treatment post surgery quickly became an annual check up so got into a habit of celebrating still being around rather than dreading the future.... took a while to get into that habit and accept it's still early days for your mum but here's to many more for you all...

[LewLew19 in reply to JanetteR57]

Thanks, yes you are right it’s a reason to celebrate rather than dread. With all the coronavirus shielding and now the cough becoming annoying I think it’s a tricky time for mum to keep positive, hopefully after Monday with the next treatment ticked and some investigation/reassurance and treatment for her cough we can again relax... hoping to try and rent a cottage for a few nights in August somewhere rural to get away from it all and take her mind off it all. It’s something we would normally do before all of this started. Thanks again x

[JanetteR57 in reply to LewLew19]

that sounds a plan - good to have things in the diary to look forward to other than filling it with medical appointments.... good luck.

[Mistyglo]

Hi hun, my mum had a real niggly cough for around 3 weeks after her first treatment which worried us because it was worse than normal but fortunately it has died down loads now , along with this cough she was also hurting in the area of the lung where the tumour is so we just hoped it was because the cancer was being attacked , we won’t know until she has her first scan x

[LewLew19 in reply to Mistyglo]

Thanks for your kind words. My mum was coughing up blood before her first scan to see if the treatment was working... we thought the worst... but she had significant reduction in tumour size! The side effect was the treatment working and the tumour breaking down. We’re 6 months into treatment now.

I should read and take my own advice but you know, when it’s your own mum it’s hard to not worry and go through the endless what ifs! The cough isn’t too bad and hopefully managed by the doctor when she sees him tomorrow.

All the best x

[Mistyglo in reply to LewLew19]

It’s so hard when it’s your parents isn’t it! Or anyone close for that matter! What great news about the reduction , it’s only my mums second this week and unsure after which treatment she will have her first scan but we are just hoping and praying we see a change for the guys, we need luck in our side for a change! What stage is your mum and had her cancer spread anywhere upon diagnosis if you don’t mind me asking xx good luck xx

[LewLew19 in reply to Mistyglo]

Sure, Mums is stage 4, NSCLC, hers had spread to adrenal and lymph glands. She had chemo as her first treatment which wasn’t successful and then we moved to immunotherapy, keytruda which so far has been working with 2x positive scans hopefully the third next month will also be good. Keytruda has been easier to handle in terms of side effects, although she is bothered by cough and skin rash.

It’s a rollercoaster, that’s for sure. Even with a positive scan result the relaxation is only temporarily lived as the what ifs set in again! And then coronavirus came along - but we’re all here, she’s doing well and we’re getting on with life as best we can.

All the best to you. Feel free to ask me anything x

[Mistyglo in reply to LewLew19]

Aw brilliant news! Talking to somebody really helps x my mums skin rash is shocking but managing to control it slightly for now , my mums stage 4 spread slightly on spine and to surrounding lymph nodes so sounds very similar hun, I agree with what ifs it’s just been a total roller coaster but just hoping and praying that we have some positivity soon with my mums scans x thanks x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LewLew19

Sorry to hear your worry of your Mum's cough which must be quite irritating for her. There have been some excellent responses from the forum of which there is not much to add to.

It is so easy to link every symptom to cancer once you have had cancer, however a cough, especially at night can be many other things, e.g. dry mouth, postnasal drip, environmental factors, pollen, acid reflux from stomach, Asthma and viral infections.

For some people a cough can be a side effect of Keytruda. Hopefully your Mum will decide on letting the specialist team know of her cough, if nothing else to give her peace of mind and for yourself. It is encouraging that your Mum has had a reduction in size of tumour.

Our booklet on ‘Managing your lung cancer symptoms’ on page 19 has a section on coughing which may be useful to look at: roycastle.org/app/uploads/2...

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Helpline