Hi, My name is Jean. I am 69 and I have severe emphysema in both lungs. I'm supposed to be on home oxygen for 16 hours a day, but I've been using it more and more lately, I'm on it nearly all the time now, I just can't breathe.
In January this year I was diagnosed with bladder cancer. I had the tumor removed early in March. Last week I was told the tumor was fully removed, and it hadn't spread but it was the most aggressive form of cancer and I would need 6 courses of Chemotherapy. I had the first chemo on Wed last week. It's the sort of chemo that's injected directly into the bladder, not the blood stream. I felt fine when I got home, but the next afternoon, I suddenly felt very nauseous and even more breathless.
My respiratory nurse came to see me on Friday, said she thought I had a chest infection and put me on antibiotics.
I've hardly been able to eat anything for about 4 days now and that's worrying because I've lost so much weight with the emphysema, I'm only 90 lbs now!
So, I'm wondering. Do I really have a chest infection or did the chemo just make my emphysema symptoms even worse? Is it really worth me putting myself through chemo when my emphysema is so advanced?
I feel so tired of it all, I struggle for breath every minute of the day. I don't want to sound self pitying but I just really want an end to this now. I'm tired of being tired.
I would be grateful for any advice. x
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Hi jean from another jean :). I find it strange, like presumably you do since you're asking about it, that the nurse would just say she THOUGHT you had a chest infection. Was your sputum a different colour to normal? Are you coughing more than usual?
Breathlessness can of course be caused by infection. But principally it's caused by inflammation (which is often of course connected with infection) narrowing the airways. When I get more breathless than usual I tend to need more prednisolone which treats inflammation. Since you are worried you could ask for a telephone call with your nurse and ask why she would automatically think you have a chest infection if your only symptom is breathlessness.
Do hope you feel better soon and commiserations re the chemo, never pleasant.
Hi Jean, thank you for your kind reply. The nurse who put me on the antibiotics said I didn't need prednisolone because she couldn't hear any wheezing. After I read your reply, I phoned the nurse, but got a different nurse, when I was gasping trying to tell her I couldn't breathe and thought I needed the prednisolone, she said yes, take the prednisolone!
I am feeling a bit better today, breathing is still bad but I have calmed down a bit. I think my problem is, I keep seeing a different respiratory nurse each time and they all seem to have different opinions.
Still, I know there are a lot worse off than me, so I'll just carry on as best I can.
Yes, Im good thanks Jean. There will always be people worse than others but none of them would want you not to ask for the advice you need. And anyway you're going through a lot just now.
Glad the pred seems to be working. Just remember that it's for inflammation, you do not need to have an infection to take it, just problem breathing.
Was going to suggest trying to see a consultant but see below that you are doing so next week. Im sure that to deal with the chemo and recover from your cancer treatment your breathing needs to be at optimum level. I find it shocking that you've had a nurse who didnt understand about treating breathlessness. Hopefully you'll be able to reduce the pred as your breathing and health improves. But when we need it, we need it! Take care.
I am not knowledgeable about chemo but I just wanted to say it's an awful thing to have to endure especially with your lung issues. Could you speak to your doctor about how the chemo may be making your emphysema worse? I think you need to discuss in depth with your medical team to decide if you want to continue the chemo or not.
You don't sound self pitying at all. I totally understand what you mean about struggling. It is terribly wearing physically and emotionally.
Hello Caspiana, thank you for your kind reply. I'm feeling a bit calmer today. I have spoken to my cancer nurse and we've agreed to put the chemo on hold for a few weeks to give me time to recover from the infection.
Dear Jean,Treating cancer should be done with a multi disciplinary approach when you have another existing condition,i recently lost a good friend who had coexisting conditions and i know for sure that both her oncology consultant and her respiratory consultant communicated with each other over the best course of action and also that her respiratory condition was far less severe than your existing emphysema so therefore as difficult as it may be you must contact your lead consultant and make sure this will happen in your case.
Wishing you the very best for the future and please as tired and distressed as you are please flag this up via your medical team and do not rely on just your respiratory nurse to make these assumptions.
Thank you for your reply, all of which made very good sense. I am going to see my respiratory team at the hospital next week. They can get me in to see my consultant. I have put my chemo on hold for a few weeks whilst I try to sort things out.
Hello Jean, I agree with the other Friends here who have given you Good advise. I understand more about Emphysema stage 4,( I'm also on 02 24/7 now from 16/7)/ But, I recall when my daughter was having her Chemo after Breast cancer, she always felt very poorly for a week after the Chemo, she didn't have a Lung Problem but the chemo made her Breathing erratic. Your Nurse, sounds a bit flippant, Lately I have heard a lot of Nurses being like this. Not Good for the NHS is it, See your Consultant urgently or phone her/his Secretary, they are good to Help you, as mine does. Keep as strong as you can Hun, we are here to listen. Love Carolina. xxxx
Hi Jean. I think you should speak to your oncologist because nausea is very very common after chemo. My own daughter had leukaemia when she was just 16 and went down to 85lb I think from 125lb prior to her treatment. It is rough and they can give you drinks to up your calorific intake.
She also experienced lots of panic attacks which certainly seemed like she was struggling to breathe.
I have to agree with the others about the nurse giving you ABs without being sure you have a chest infection and absolutely would be discussing the treatment with the specialist as soon as possible.
Chemo is vile, but it has to be because cancer is even more vile ((()))
I understood that chemo can damage the lungs. I knew someone who was a singer who refused chemo because of that reason. It would be a good idea to talk with your consultant about it. I am sorry that you are going through all of this. Best wishes from Oz.
If your cancer hasn't spread have they given you any idea of the chance of it 're occurring? My sister had bowel cancer last year ,she nearly died.However,her chance of reocccurence was given as only 5% ,So she refused chemo.She is recovering well.I would ask for a rethink on your options. Good luck.xx
I unfortunately know too much about bladder cancer as hubby has it. He also has copd. I assume that you have been allocated a cancer nurse who I think you should contact so you get a multi-disciplinary approach. If you want support over the cancer issues have a look at the Fight Bladder Cancer site. They are a lovely bunch of friends I have made over the years. Good luck with the chemo!
I have been on oxygen for 12 hours a day and also am being treated for bladder cancer this is my second time .im also on chemo straight in to the bladder I have had 6 weekly ones and am now on I a month for 12 months I have not had any problems until last week when I had to cancel my chemo as I had chest infection ,just phone the clinic where you have your chemo explain to the about your concerns and they will put your mind at rest .
Hello Jean, I do understand that you have the problem of your breathing as well, but when I had a very virilant type of breast cancer, I had the breast removed and after a bad bout of MRSA I then had a long course of chemotherapy. (And then Radiotherapy) It was horrendous, I felt sick, weak, and ill the whole time. I thought it would never end. But it DID and I was so grateful for the time I still had in life. I was greatly helped during this time by relaxation cds, and a friend did the relaxation with me. Also, can you perhaps have some complete nutrition in a liquid form, the doctor can supply these as soups and shakes, I do remember that I wanted vinegar and/or salad cream or mint sauce on everything, even in soup (not puddings 🤪) The main thing that helped me was a few dear friends, which can be found, if necessary, as you know, on forums such as this.
We, your friends, are here. We know how you feel. Let us help and support you through this, and when you come out the other side we will celebrate with you.
Hi Jean, I just cant imagine what you are going through, but know that we are all here for you on this site. Its understandable for you to be tired out after chemo and think you should ask the doctor for liquid nutrition as PosyP suggests. Rest up as much as possible and ask for help if you need it. Thinking of you x
You really do have a lot of support on this thread. I’ve just remembered that I spent a lot of time sleeping during the chemo months. It helped pass the time. Also the doctors apparently have much better anti sickness tablets and meds now, so don’t suffer, ring your surgery and ask for some, if you need them. My surgery have “Proactive Nurses” to help all patients who are over 65yrs, if your surgery do the same you could ring and ask to speak to the proactive nurse, it is surprising what they come up with. It is now 2am and I have overstayed my welcome, but will look in on this thread tomorrow to see how you are. Goodnight.
I’m so pleased that you are calmer today. Steroids might make you feel better. Also Decor has a good point for you to ring the dept where you had the chemo, they are usually very helpful as Decor said, tell them of your concerns, see what they say .
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