Needing some input. In July they said I was in remission then in September I could not catch my breath. When to the hospital did a CT scan and my cancer came back. Dr said emphysema and COPD and fibrosis is why I can't catch my breath. It came on all of a sudden. Is there anything I can do to make me breath any better?
Can't Breathe: Needing some input. In... - Lung Cancer Support
Can't Breathe
Hi,
Had you had radiotherapy in July, for the cancer to come back, so quick??
my heart goes out to you to develop all these other conditions so rapidly.
Did they explain how and why you developed all these other effects so quickly??
I hope they have managed to treat and help you?
I hope your breathing has improved?
Take care.
Fifi
The only thing I could recommend is Symbicort inhaler. I have radiation pneumonitis and I use a nebulizer twice a day and the inhaler twice a day. It seems to help some. Are you on oxygen!! Have you ever considered a second opinion? I pray you get to feel better and breathe easier.
You went in to remission in July after having how many treatments? What kind and what stage were you?
6 weeks of radiation and 7 chemo treatments. I was doing great for about three months then I could not catch my breath. Cancer came back in different places confined to both lungs. Dr said fibrosis COPD and emphysema. They gave me combivent and advair. As long as I don't do anything I can breathe. If I try to do anything like walking or anything around the house I run out of breath. My o2% stays up about 96 to 98.
@Dragracer hi i'm jo I have emphysema I am on oxygen. I am on three diffrent inhalers. Some times I will take it off and do a few things I can go up to five hours i'm not supposed to do that .I would be demanding to know why you got all of this at once. You ask your Dr make him explain it. I don't know if you had a lobectomy. I only have one and a half lungs so my breathing is less. what is going on with you is strange sorry about the cancer keep on fighting don't give up. let us know if you find out anything. Jo Taylor
No surgery. I had a double bypass in March of 2015 so they couldn't do surgery. I have two spots in the left lung and three spots in the right. Up until August I could breathe ok. Couldn't run a marathon but I am 67 years young.lol. Just started all of a sudden.
Hi drag racer ,
Sorry you are having so many problems right now. Which kind of cancer did you have to start with? Hope you can find a new plan soon and start feeling better.
Hi Dragracer, by now you've seen the dr and I'm curious to know what was decided. Was hoping to read that you will be receiving pulmonary rehab.
My fingers are crossed and prayer sent up that its not a pulmonary embolism or enlargement of a pleural effusion.
Hope to hear from you soon.
I am going to be doing a CT scan to see if I have any blood clots. I have done some research and I want to talk to them about pulmonary pneumonitis.
They didn't say anything about pulmonary rehab. I wish I could just be able to do anything and still be able to breathe
Dragracer,
Welcome. We will be waiting to hear what your CT scan shows. Don't be shy about asking questions and getting the answers you need from your medical team. Also, don't hesitate to get a second opinion (if you feel you want to do that) - it is considered routine, as you may already know.
Make sure your doctor understands the things you are experiencing, please don't suffer in silence.
Sounds like you are pushing for what you need, so keep it up and keep talking to us! We want to hear how you are.
Peggy
I want to thank everyone for all of the input. I did a little research on my own and I would like to have one of my dr s check for radiation pneumonitis. I know that you should not try to be your own Dr but the way this came on I would like them to at least take a look that way.
D-racer, you may have to demand a new pulmonary function test (PFT) to establish a new baseline. I had to push and push to get mine but this is something that should be standard of care.
I am going to see a pulmonary Dr on the 10th. Talked to radiation Dr today and he is going to treat me for radiation pneumonitis. Don't like being on steroids for a month but will try anything at this point.
I think the Dr is going to do that when I see him.
Well I don't understand Drs but I didn't go to school for a bunch of years. They put me on prednisolone at 60 mg for six weeks. Then onc told me to stay at that for two weeks then taper off. Ten mg a week. No ketruda treatments until I am at ten mg for a week. No scan until then. I would like to know if the first four treatments worked but I guess I have to wait
Hi there. I hope you are doing better? My mum suffered from copd and after her radiotherapy she suffered from a condition called radiotherapy pneumonitis. Might be worth asking your doctor to check this out. Xxx
They started me on steroids for about six weeks and it seams to be working. I am down to 30 mg now and can breathe a little bit better. Had to stop receiving ketruda treatments until I am down to 10 mg but that is only for 6 weeks
Dragracer,
Thanks for the good news. Hope the breathing continues to improve. Please keep us updated!