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Pneumonitis

9 REPLIES 9
HJU63
Member

Re: Pneumonitis

Hi Louis, glad to hear that your symptoms are improved. My pneumonitis was v different to asthma - no audible wheezing, no crackles inside lungs, peak flow ok and oxygen sats within normal range. However, I was desperately breathless and my heart rate was 120 rather than 70 ish. My pneumonitis didn't show up on an x-ray and Onc acknowledged this and said you have to have a CT scan of lungs to diagnose as the inflammation is of the smallest parts of the lungs, the alveoli. I hope you continue to improve - if not keep pushing. Take care, Helen.

louisthecat
Member

Re: Pneumonitis

thank you Helen, really helpful. I'm asthmatic too, so wonder if I am having the same red herring issue as you! I saw the doctor today who thinks it is getting better, and tomorrow I finish rads anyway. The only thing they could offer me in the first instance was a chest x ray which I have declined for now, as my symptoms are not as bad as they were. The Dr has basically said give it another week and if things don't improve then they will start to investigate further, so am going with that for the moment. Mainly because I think my body has been through so much in the last year that I don't know whether I'm coming or going sometimes, and I think just waiting to see if things settle down might be a good approach - and if not then getting straight back on the phone to my BCN.
Thanks for sharing your experience, I really appreciate it
Louis x
louisthecat
Member

Re: Pneumonitis

sorry accidentally posted twice
Louis x
louisthecat
Member

Re: Pneumonitis

thank you Helen, really helpful. I'm asthmatic too, so wonder if I am having the same red herring issue as you! I saw the doctor today who thinks it is getting better, and tomorrow I finish rads anyway. The only thing they could offer me in the first instance was a chest x ray which I have declined for now, as my symptoms are not as bad as they were. The Dr has basically said give it another week and if things don't improve then they will start to investigate further, so am going with that for the moment. Mainly because I think my body has been through so much in the last year that I don't know whether I'm coming or going sometimes, and I think just waiting to see if things settle down might be a good approach - and if not then getting straight back on the phone to my BCN.
Thanks for sharing your experience, I really appreciate it
Louis x
HJU63
Member

Re: Pneumonitis

Hi Louis, I hope you are continuing to feel ok today. You may need to push for the treatment if it is pneumonitis- I don't recommend just leaving it.From what I have read pneumonitis is a relatively unusual reaction. I had to visit 4 different DRs and my BCN over 7 days before I got the right tests and then the right diagnosis. During those 7 days it got a lot worse. It was my Prof of Oncology who spotted it - the red herring for me was my asthma and the brief relief I got from using my inhalers. However, by the time I saw the Onc I was certain it wasn't asthma and luckily he agreed and sent me for a CT. Mine was triggered by the chemo and I had to stop chemo at that point and have not been able recommence. Whatever is causing your problems you need to get the right treatment - unfortunately this may include steroids but if that is what it takes to make the breathlessness (sp?) go away .... Good luck, stay well and push for help if you are not better on Monday.
Helen

louisthecat
Member

Re: Pneumonitis

Hi Helen
it sounds like you really suffered. Good to know that the steroids helped sort it out though (I'm not keen on them either).
The anti-histminesno were just what the RT doctor prescribed as a response to my symptoms. She said it was that first and then if that din't work it would be steroids. I have only been on the anti-histamines a few days and my cough is a little better but it's still there, and now I am getting a pain in my chest - which I told the RT nurses about yesterday. Typical that this all happens on a weekend!
For now I am OK but if it carries on or gets worse I'll talk to my BCN on Monday about it and see what she thinks I should do.
Thank you for sharing your experience with me, very helpful.
Louis xx
HJU63
Member

Re: Pneumonitis

Hi Louis, I developed pneumonitis as a reaction to Paclitaxel. Symptoms like yours - extreme cough (hard to breath in when coughing) and incredibly breathless and at one stage in a wheelchair as unable to stand/walk. I was only diagnosed after a CT scan as the inflammation did not show on an x-ray. My treatment was anti-biotics ( I think to make sure I didn't fall prey to an opportunistic infection) and high dose steroids. This regime had a positive effect very quickly, the cough stopped within 24 hours and the breathlessness improved over 2 weeks. I received treatment for the pneumonitis for 9 weeks in total. Personally, I am not keen on steroids but they did the job. Since the pneumonitis I have undergone 20 sessions of RT with no recurrence. I could not find much written about chemo induced pneumonitis but there is more about RT induced pneumonitis.
You say you are taking antihistamines - is that because you suggest an allergic reaction to something?
Helen

louisthecat
Member

Re: Pneumonitis

Hi Kath

yes they put me on tamoxifen at the same time, I didn't realise that might be contributing too. I'll give manuka honey a try!
Thanks for reoplying
Louis
kath12
Member

Re: Pneumonitis

hi louis
sorry to hear you're struggling with side effects .
i'm also having rads, number 17 of 25 today - i have a little cough but more to do with grandchildrens' germs i think!!
sounds like docs are doing what they can.....i can only suggest manuka honey.....will be soothing at the very least!
are you on hormone therapy? as i know that can sometimes give people throat problems
sorry i'm not much help but perhaps this will bump up post & someone else may be able to help or you could phone the helpline & i find they are always very helpful
k x

louisthecat
Member

Pneumonitis

Within a day of starting radiotherapy, I developed a hard irritating cough, and became more short of breath again (breathlessness was one of my chemo side effects). Ten days later I find myself being diagnosed with inflammation of the lungs. We are trying anti-histamines first to see if they'll work, otherwise it will be steroids. I'm finding this more distressing than I expected - I can't sleep for coughing and have a hoarse voice. Has anyone else had this, and do you have any tips on how best to deal with it? I don't finish radiotherapy for another week - how long will it take to go away, in your experience?
I am very grateful to anyone who takes the time to reply.
Louis