Is it normal for your lungs to deteriorate so fast, I mean over a few months not years ?
Last year I had six weeks chemo & radiotherapy for cancer, I had two serious chest infections while having this treatment. In November last year I developed headaches ( constant for around ten days) with breathing problems, shortness of breath mainly. I was COPD before the cancer but only mild, stage one. Now I have lost 50% of my lung capacity.
I have learnt that the cancer treatments can cause further lung damage, and now my GP has told me that the cancer treatment has altered my cholesterol levels. Bad cholesterol can also damage your lungs he says.
Since January this year my breathing has gone down hill and in the last 2 months I have noticed that I can no longer walk from my living room to the kitchen and back without being short of breath, even just pulling on a pair of socks leaves me breathless.
I am on inhalers and cholesterol tablets but it seems like every day I find it harder to breath, is it normal for things to get worse day to day, week to week ? At this rate I expect to be around for about 6 more weeks unless somebody gets a bit more interested in why things are going down hill so fast,
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PeterK1
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Oh Peter I really don't know. We are all different. I know this year I'm not as good as last year. Try to stay strong. I didn't know bad cholesterol could damage your lungs. Thanks for the info. I'm not on drugs but have been told to bring it down. I find one of the Practice Nurses at my Doctors is very helpful and will often have a word with my Doctor and move things along. Keep at them to help you.
not ready to give up, but I get the impression ALL the medical professionals have !! not that there are many involved.
It just feels to me like nobody really does anything for COPD any more, it's a smokers disease and as they did it to themselves why should we do a lot for them ? Make it look good on paper !
Dole out inhalers and give them exercise classes but in reality the government are telling all the NHS staff not to spend a lot of money on it's care as it is not curable and it's self inflicted in most cases.
The government have even set up a guide that says how long before you get to see a specialist, you need to be almost dead before you get the care from a consultant, a bit late then, and what if it's not caused through smoking ? They put it all down to smoking and if it's not, well the level of care doesn't change anyway.
Sorry for what looks like a negative outlook, but having been through the cancer treatment and had first hand experience of the treatment, every day for six weeks, you see just how much money is spent on radiotherapy machines, new treatment centres, research, and so and so on,
then show me the specialist centres, the expensive machines, the fortunes spent on research for COPD, then I will believe the NHS is committed to treating and finding a cure for lung problems.
Trials for drugs are funded privately, most research is either done abroad or in private clinics.
The USA spend a fortune to find a cure, we tag along on their coat tails, if they find a treatment our government then look at the costs, it's that cost of treatment that decides if we in the UK can have it or not.
If a 100% cure was discovered tomorrow our government would first ask, HOW MUCH ? then they would decide if we can have it. There would be no great celebrations in any government department that a cure had been found !!!!
In fact they would not want us to know, we even now have to do our own research to find out about new treatments, I know I did with Relvar Ellipta, my GP had never even heard about it even though it was licensed last November on prescription. My Hospital, a so called UNIVERSITY HOSPITAL only found out about it last week !!!!!!!
A new cancer drug comes out, wow it's on the national news !! when was the last time you saw a new drug for COPD hit the National News, go on all TV news stations as a great break through ??
Anyway, sorry for the rant, just feeling really let down by all the so called medical professionals.
One point you make, I am afraid I have to disagree with. The USA government DO NOT spend a fortune looking for a cure for COPD or even the best way to control it. The money spent on COPD research is from the drug companies and research centres and they have absolutely no intention of curing anything. They want to find a way to control the symptoms...if they found a cure a patient wouldn't need them again.
You ask, "Is it normal for your lungs to deteriorate so fast, I mean over a few months not years?"
Good question.
Six years ago I too had Radiotherapy for cancer, at first I walked quite happily for the treatment and on the follow up visits, but each visit became more difficult until in the end I was using the hospital wheelchair to see the Oncologist,
Now, like yourself I can't move without becoming short of breath, but trying to put an estimate how much life I have left is a non starter.
Of course I am aware of how ill I am, I think we all are, but living is such fun and I have no idea of making things easy for the old reaper so I remain positive, take my meds and try to take life as easy as possible.
I no longer make plans for too far into the future but what I can achieve I will with all the gusto that I am capable of.
Hang around here with us my friend, you are in capable hands.
I cannot answer your question as to why are your lungs deteriorating so fast. I assume you do not smoke because if you do that would be a reason. I do know what you mean when you say how you get out of breathe just walking to the kitchen and back. That is the same for me. However, as to research there is much research going on at the moment. My hospital the University of Wales Hospital does a lot of research although it is true to say the research is funded from a private source. We have to remember the huge cost, running into billions of UK pounds in the cost of lung illness in the UK alone. The drug companies do not want to lose this. that would be a huge loss to their profits so believe a cure will not happen that fast. And as already been said if a cure is found, Nice will refuse to fund the cost of treatment. It seems to be a short sided lose situation but the government should realize the enormous burden the disablilty and loss of earnings into the economy illnesses like copd are costing the country..
Oh Peter I am just so sad to read this post, you have always been a wonderful source of good info to me since I joined this site, I had no idea you were so ill.
On reading your post & then reading 'eightyplus's' reply, I wondered if the chemo did something to your body that just generally made you very weak, and was not actually damaging the lungs further, but just sapped your strength. I do hope so , as perhaps that means that once you build yourself up again you will feel a bit better.
I do understand you are upset with the NHS & NICE right now, but I know you will be researching everything for yourself, and will 'educate' your doctors if anything new comes out that might help you
I know you should not have to do this, but one has to deal with the realities of the situation, and manage with what we can do for ourselves.
Unless your cancer returns, I really do not feel you are about to die because of your COPD, I feel sure your body is just run down and weak from the chemo treatment. Do eat healthily and perhaps take some supplements, and aim to rebuild your strength.
It is possible that while you were ill, your lungs did not get cleared every day with your physio, that may be making your breathing worse.
I am interested in you saying you are better on Revlar Ellipta.....I am just stopping my spiriva as I am finding my mouth unbearably dry all the time no matter what I do to alleviate it, and I was going to ask my doctor to change me to Revlar Ellipta
Do keep posting and letting us know how you are doing, I am worrying about you now
Hi peter k1, I was wondering if you have taken a course of prednisolone tablets and if they had made a difference, also have you tried different inhalers...some make my asthma worse. At one time I found just walking a few feet a real problem. Have you rung the BLF helpline? Best of luck.
Hi PeterK1. Sorry that you are so unwell. I don't have much to add on the advice front except to say keep pestering the medical professionals for more help (have you had a pulmonary rehab course?). But I did want to back up what you say about the difference between the attitude towards cancer and other 'non glamourous' illnesses. When my sister was treated for breast cancer last year, I couldn't believe how quick her treatment was or how plush the (NHS) ward was compared to the general ward lung patients have to put up with. Not sure what we can do though.
Sorry for being on a downer today! Not usually like this but this morning as well as the breathing being so hard I am coughing up blood, scared me a wee bit lol, I will keep fighting and researching new treatments and posting what I find.
Picked myself up a bit now thanks to your responses so I will be back to my old self soon thanks all of you.
Peter. You don't mention whether you are on long term oxygen therapy. Do you monitor your oxygen sats? I've been on oxygen for over 5 years and although my lung function FEV1 is only 32%, I can generally cope with most things within reason with the help of O2.
Hi Peter, I'm no expert but it seems to me that the treatments for your cancer would be bound to make every other condition you have worse. Feeling weak and unwell from rt and chemo would definitely add to your breathlessness. I hope things begin to improve and that you find some medication to ease the sob.
Hi Peter, I can relate to how you are feeling. I was diagnosed with Breast Cancer in late 2011 and part of the process prior to having an op was a chest xray. They queried if I'd had TB, (no, apart from an irritating non-productive cough I'd had for almost 12 months). I didn't get to see the Respiratory specialist until after my first round of chemo, 2 months after the op (there was a reason for the delay). My breathing deteriorated within a week of the first session and became even worse after the 2nd. Because of other factors with the chemo, we didn't continue but did have 17 sessions of Radiotherapy. The breathing had settled until around 6 months later where I became extremely short of breath. in Jan last year I had a lung biopsy which proved I have Hypersensitivy Pneumonitis - although myself and my GP are convinced that the chemo and Radiotherapy have definitely contributed to how bad my lungs now are.
I would say that in time, things will settle to a point where you will cope with your lung capacity. I would be interested to see if you are put on Steroids - they have been my life-saver and the difference after the first 3 months was such a relief. I am on them long-term now and dread to think how I would be without them, although in the process of slowly being weened off them. Let us know how you go, I'm sure things will improve soon.
Hello ALL, sorry I have not been on for a while, thank you all for your well wishes and I hope you are all as well as you can be.
Here's a little up-date on this thread;- I have been fighting my GP to get to see a lung consultant and finally he agrees, he is " not qualified to diagnose what is wrong with my lungs" only taken since November to get this admission from him. So finally I think things might move forward ! I continue to go down hill fast, I get the NHS Choices letter about an appointment and I phone up, end of July is the earliest available appointment. 6 weeks from letter to appointment.
My cancer consultant is worried that at the rate I am deteriorating it will be to late for a lung specialist to correct any damage ! Now when they found the cancer I had all the treatment, chemo', radiotherapy, an operation, after care, follow up appointments, the works !!!! NO MENTION OF BUDGETS !!!
My cancer consultant mentioned at his hospital the lung people are doing stents in to lungs to help improve breathing, he suggested I go back to my GP and ask for a referral to be considered for this operation.
My GP says " Sorry, yes we know about the benefits of this type of treatment but we do NOT have the budget to send you for this treatment" how does that work then ? cancer, all the stops come out and I get the full monty, but lungs, erm we have to consider our budget !!
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