Newbie

[Maxiem]

Hi All

I am new to this site and thought I should make a post.

2 years ago I was diagnosed with stage 4 lung cancer, have just completed 2 years of immunotherapy, one treatment every 3 weeks.

The consultant says I have responded really well for someone aged 78 but unfortunately during the last few years my fibrosis has been getting worse, so instead of celebrating that my cancer has reduced dramatically I am struggling for breath with copd.

There doesn’t seem to be much in the way of treatment, i have 2 revelar? Inhalers which I use once a day, and a blue relief inhaler, a lung specialist told me quite candidly that there’s not a great deal he can do.

Have been told that I don’t need oxygen at the moment.

Finding it very difficult at the moment, this fibrosis is worse than the cancer

Stay safe everyone

[Katinka46]

Welcome to this forum. I am sorry you have had these problems. You say you have fibrosis, is that pulmonary fibrosis? And then you mention COPD. Do you have both PF and COPD? Have you been referred to pulmonary rehabilitation? That might be a help with coping with your symptoms. It is a course of gentle exercises that is geared to each individual and then followed by talks and information on lung conditions. Your GP could refer you. It might also be a help to have a couple of sessions with a respiratory physiotherapist. It is very hard to be breathless all the time.

Look after yourself.

Kate x

[HungryHufflepuff]

Hello and welcome 😊 I'm sorry to know you're struggling at the moment. Like Katinka said can you ask to be referred for a pulmonary rehabilitation course? It could be helpful for you 🤞 Wishing you all the best.

[Maxiem in reply to HungryHufflepuff]

Thanks for getting back to me,

I did ask the respiratory nurse about a rehab course, but was told I would not be acceptable as I have angina?

[Maxiem]

Actually I’ve been told it’s pulmonary fibrosis, and another doctor called it ipf and tha nurse has said I have copd,

I think that because of the lung cancer everything else seems less important, but the oncologist is adamant that the shortness of breath is principally due to the fibrosis and I am left a bit in limbo.

Thanks for replying.

[skischool]

Maxiem.ipf is the same as fibrosis,it just means it's ideopathic in that they don't know the cause of it and it all gets covered under copd as far as the nurse is concerned.

perhaps you can ring the blf help line on monday and they can probably provide you with a cd or book explaining gentle exercises to do at home to help with your breathing.

There are a couple of medications that can help to slow the progress of fibrosis,perhaps your consultant can explain them to you but maybe their side effects might outweigh their benefit,only he could tell you.

Anyway welcome to the site and we are always here for you if you want advice or even just a chat for company.

Best wishes Ski's and Scruffy cat x

[Caspiana]

Hello Maxiem , 👋

Everyone else has given you some good advice. I just wanted to say hello and welcome to this helpful forum. It's a great place to receive and give support to others. I hope you have a good weekend.

Best wishes,

Cas xx 🙋

[CDPO16]

Hello and welcome. I haven't got fibrosis but have very severe emphysema and struggle with severe shortness of breath every day and agree that it is very debilitating. My inhalers don't seem to help much but I wonder how I'd be without them. I also do not need oxygen therapy although this does not help ease breathlessness.

I have done pulmonary rehab which didn't help. I would have thought that if a programme is run properly that exercise on a course would be tailored to take into account someone who also has angina. That said, I doubt that courses are being run at the moment due to the lock down. In my case at the course I attended everyone was treated the same with no personal tailoring of exercises. I did adapt the exercises to my ability but was never able to build up what I could do (the main aim of rehab) due to severe breathlessness. The theory part was also skipped completely on many occasions.

I too have been told by two consultants that there is nothing more they can do so I can relate to how this makes you feel as well. I noted that you take your revlar inhaler once a day and I wonder if taking this twice a day would help. Perhaps this is something you could discuss with your GP on a telephone consult or your nurse. Phoning the BLF helpline may also be of benefit to you.

Best wishes.

[Dedalus]

I'm afraid I can't help with your query, but as you can see from above, others can. Just wanted to welcome you to our wonderful site.

[watergazer]

Welcome to this site Maxiem x Anita

[katieoxo60]

Welcome to the site, sorry to hear you are struggling with illness but you have chosen the right place to come. Keep as well as you can the inhalers should help some .Hope too talk again soon.

[ninelives]

Welcome MaximeThis site is great for support ,advice and never feeling so alone.

Hope that your situation improves soon and,that you are able to access the help that will work for you

[23september]

Has your breathlessness improved? Lots of breathing exercises helped me. I do breathing through the nose too. There are loads of breathing exercises on YouTube.. I would recommend my favourite one. Yoga nostril breathing with Adrienne. I watch her and practise it with her on my TV. It feels like being in a class too. The pursed lip one is very good too. From British Lung Foundation. You just st have to breathe in and purse your lip and breathe out. Take care