Looking for some advice. My mum got diagnosed with Stage 4 in January and started treatment in March. She initially had chemo (Pemexetred and Carbo) and immuno (pembro) every 3 weeks and managed around 6 of these cycles with a holiday thrown into the middle, and her first scan results were positive with some shrinkage.
However in late August she began to feel a lot worse following treatment and we have had to drop the chemo as she was struggling too much with the side effects/not recovering.
She has been on immunotherapy only the last 2 cycles and was doing slightly better (still not well enough to go far from home as before in the summer) just lots of fatigue and back pain but the last 2 weeks or so she has been hit with extreme shortness of breath and is barely able to walk round the supermarket. This is new to us and her, and her most recent scan showed shrinkage so we're surprised she is feeling worse despite stopping the chemo. Negative covid test, no weight loss and her bloods are ok.
Has anyone else ever had acute shortness of breath and it's been treated and gotten better, or is this suddenly the new normal? She had been doing really well on her treatment and it's been a bit of a shock that she's suddenly really struggling as her scans have been good despite her being stage 4. Your mind goes straight to it being something permanent and really serious like progression of the tumours blocking the airways but i'm hoping its just an infection or perhaps a bit of fluid build up. She had such a good quality of life and in the space of a month it's suddenly all been taken away and she can barely leave the house.
The hospital gave her some antibiotics which 5 days on don't seem to be improving things. Can anyone share any experiences wirh Shortness of Breath and if anything helped you? She has a little finger monitor I bought her to measure her sats and they have been really low but the hospital are keeping an eye on it.
Thanks in advance,
Written by
DaughterofDiane
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Sorry to read about your mum and how worrying and distressing this must be for you all.
Acute shortness of breath could mean a number of things, as you say, infection or fluid in the lung, even anaemia. The antibiotics usually start to make a difference within 2 days, and as she is not better, it may be advisable for your mum to be reassessed. I assume your mum is at home just now and if she is still in hospital I am sure they will be clinically assessing her.
Many have shortness of breath living with lung cancer and many treatments can improve the symptoms, as your mum has had an acute change you could contact the acute oncology team (if they do not know already) you can contact them through the hospital switchboard, or through the lung cancer nurse specialists. Your mum may have been given a 24 hour number where they can triage her symptoms or you could contact NHS 24 on 111 if you are unable to get a hold of anyone. If anything else, it will give you some peace of mind.
It is encouraging that her scans show a good response to treatment.
If you think your mum is becoming acutely unwell or breathing becomes worse do take her to A and E.
You are welcome to contact us if you would like to discuss anything on our ask the nurse service, 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org
Thank you very much for this reply, this has given me a lot of comfort. She has now finished the antibiotics but isn't much better, although her sats have improved a little. We are seeing her Oncologist next week anyway for her scan results so I will make sure to bring all of this up with him if she still does not improve as it feels like an Acute change rather than general decline.
I have added this link from Cancer Research UK, where it details potential side effects of Immunotherapy and one of these can be inflammation of the lung tissue - Pneumonitis, and this is often helped by a course of steroids as DBdibble has mentioned. The symptoms present as breathlessness, cough and reduced oxygen saturations. cancerresearchuk.org/health...
Even though you are seeing the oncologist this week, it may be worth letting the acute oncology team know anyway, before her appointment, in case they want to assess or do any tests on your Mum.
Any breathlessness, can exhaust the person and both their energy and physical levels, mobility can be affected by this.
Hope your mum starts to feel better soon. You are welcome to contact us if you would like to discuss anything at anytime.
Ask the nurse support team
0800 358 7200 Monday to Thursday 0900-1700 Friday 0900-1600
My wife was on Pem for 37 3 weekly cycles which finished in January, we had to stop it midway because she started to suffer with pneumonitis, this left her very breathless and was resolved by a course of steroids (predisalone) after this and to present she has been on a maintaining dose of 5mg a day which has kept the breathlessness at bay. Also a very quick short term help is a mini handheld fan, which she keeps in her bag as sometimes cold weather exacerbates the issue. Hope this helps D Xxx
sorry to read about your mum's breathlessness - as others have said, it can have several causes. a hand held fan has been found to be effective and bring comfort as others have said (clinically evidenced). She may also have subconsciously altered the way she is breathing due to the breathlessness which can make things worse - I had a lobectomy in Dec 2010 and initially recovered well but did have breathlessness on inclines/stairs for some time then developed other symptoms. over time I've had some really nasty chest infections that have hospitalised me - and sometimes they've been able to get a sputum sample then prescribe more targeted antibiotics than broad spectrum ones that helped. I now have a 'rescue pack' of steroids and antibiotics (having tried several types they've settled on doxycycline for me but all are different).
I was also diagnosed with dysfunctional breathing/vocal cord dysfunction just before the pandemic and wasn't using my diaphragm properly so was given breathing exercises to retrain the way I breathed. that made a difference but took time. I was referred to online exercises during the pandemic (yoga with Adrienne and information on asthma+lung UK and referred to this website for resources. physiotherapyforbpd.org.uk/
hope she picks up soon... it's natural to think the worst but I've had far worse symptoms personally with subsequent chest infections than I did with my lung cancer. not all breathlessness is cancer related or even lungs related (heart can also be affected) so do raise this with the clinical team when she next sees them. good luck.
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