Coughing

Billie67

Hi all,

Hope everyone is doing as well as can be expected. I know so many are waiting on biopsies and to start treatment or to finish treatment or to simply start feeling well again so I feel a little silly addressing what may be nothing.
I have a question, which is also a concern. I am 12 weeks from rads, 14 weeks from Erbitux for stageIV laryngeal SCC with a couple of nodes "lighting up" as my onc says. For the most part I feel pretty good. Eating what I can, although gaining nothing :-(
I remember coughing a lot and choking on that terrible thick ropey mucus towards the end of treatment and for a few or more weeks after. That all got better but now for the last week or more I have this crazy dry cough. Mostly at night when I'm trying to sleep. But it does happen in the daytime too. First I thought it was from the ceiling fan, it's been really humid and hot here in southern California. Now I wonder if it's more serious......lungs?
I get my PET/CT on the 24th and my pretreatment scans were clear as far as my lungs go.
Does anyone out there have any idea about this? I don't feel like I have a cold or anything like that.
Gosh the 24th seems so far away, but we've all played that waiting game right?!
Ok any info would be greatly appreciated, thanks in advance :-)
Billie

ToBeGolden

In Same Boat
Well, you know that my larynx has been surgically removed. The surgery was Nov 2011, and I had radiation/chemo (Erbitux and Cisplatnum) in Jan/Feb 2012. I have had a lot of mucous and a cough since Nov 2011. But the cough has become severe since this May.

How bad is the cough? So bad that I have trouble catching my breath. How bad? So bad that security at the hospital came over to see if I needed assistance (when I was in a hall between car and doctor's office). How bad? Bad enough that I'm afraid to drive.

I had a coughing fit in my surgeon's office and got an Rx for codeine-laced syrup. It works but it knocks me out.

I know you wanted a solution; unfortunately you only got me. My first post-treatment PET will be in October. Rick.

Billie67

ToBeGolden said:

In Same Boat
Well, you know that my larynx has been surgically removed. The surgery was Nov 2011, and I had radiation/chemo (Erbitux and Cisplatnum) in Jan/Feb 2012. I have had a lot of mucous and a cough since Nov 2011. But the cough has become severe since this May.

How bad is the cough? So bad that I have trouble catching my breath. How bad? So bad that security at the hospital came over to see if I needed assistance (when I was in a hall between car and doctor's office). How bad? Bad enough that I'm afraid to drive.

I had a coughing fit in my surgeon's office and got an Rx for codeine-laced syrup. It works but it knocks me out.

I know you wanted a solution; unfortunately you only got me. My first post-treatment PET will be in October. Rick.

Yikes
Oh Rick, I'm sorry, that sounds horrible! I can sorta relate to the car part, today I had a fit while driving. Eyes watering, couldn't catch my breath and what is annoying is I can't even get a satisfying or productive cough. But yours sounds really bad and I'm sorry. I know my scan is head, neck and chest so hopefully all will show clear, yours too!
Billie

CivilMatt

excuse me while I cough
Hi Billie,

I am 25 weeks out (Friday), stage IVa, scc, BOT, 1 lymph node (surgery, radiation & Erbitux) and I get these little dry coughs, often at bed time, but anytime. They are just a short burst of coughs. My ENT looked at me two weeks ago and said everything looks fine. Honestly, the coughs are getting fewer with longer time in between bouts. It is like I choke on some spit, then cough, cough, cough. Usually a drink of water helps me. Of course my water is always close by 24 hours a day and I drink a ton of water right up to jumping in bed. I just figure, having to get up to pee in the middle of the night is part of the “new normal”.

Good luck figuring out the cough anything to do with the H&N has to pass the “new normal” with me (I am a changed person, I almost look the same, but I am different).

Best,

Matt

Tim6003

CivilMatt said:

excuse me while I cough
Hi Billie,

I am 25 weeks out (Friday), stage IVa, scc, BOT, 1 lymph node (surgery, radiation & Erbitux) and I get these little dry coughs, often at bed time, but anytime. They are just a short burst of coughs. My ENT looked at me two weeks ago and said everything looks fine. Honestly, the coughs are getting fewer with longer time in between bouts. It is like I choke on some spit, then cough, cough, cough. Usually a drink of water helps me. Of course my water is always close by 24 hours a day and I drink a ton of water right up to jumping in bed. I just figure, having to get up to pee in the middle of the night is part of the “new normal”.

Good luck figuring out the cough anything to do with the H&N has to pass the “new normal” with me (I am a changed person, I almost look the same, but I am different).

Best,

Matt

Hi Billie...
Well...let me jump in here too...

I just KNEW I had spread to the lung cancer 3 months after my last treatment...a spot in my back (upper back) was sore, my lungs hurt (I know that sounds crazy, but they did)...it ws like those times in the past when you had a chest cold or those times you breathed in reall cold air (not sure you can relate to the cold air thingy being in southern Cal) ..

...anyway...I also "developed a cough" ..not as bad as golden described above...but a cough none the less...oh boy did I know I was a goner ..seriously...

Then the PET / CT and it came back with a little hot spot in vocal cords and NOTHING anyhere else

I too had Erbitux and radiation ..nothig else ...I was base of tongue and stage III with one lymph node ...

...my oncologist says that Erbitux really tears you up inside and out ...

I'm no doctor Billie...but I feel you will get a clean PET and I feel the coughs are from dry throat..dry deep down in the throat ...I belive that's was still causes my coughing from time to time ....and I am no 8 months out from my last rad ...have had a clean PET ...a NED CT/w contrast of head and neck and all of my monthly scopes and visual / finger exams have come back good!

Par for the course Billie....whispered a prayer you have a NED PET!!!

Best,

Tim

ToBeGolden

ToBeGolden said:

In Same Boat
Well, you know that my larynx has been surgically removed. The surgery was Nov 2011, and I had radiation/chemo (Erbitux and Cisplatnum) in Jan/Feb 2012. I have had a lot of mucous and a cough since Nov 2011. But the cough has become severe since this May.

How bad is the cough? So bad that I have trouble catching my breath. How bad? So bad that security at the hospital came over to see if I needed assistance (when I was in a hall between car and doctor's office). How bad? Bad enough that I'm afraid to drive.

I had a coughing fit in my surgeon's office and got an Rx for codeine-laced syrup. It works but it knocks me out.

I know you wanted a solution; unfortunately you only got me. My first post-treatment PET will be in October. Rick.

Not To Upset ....
I need to say two words: "Whopping Cough". Washington State has an epidemic, worst state in the USA for whopping cough. The Mayo Clinic Web Site says there is a blood test. All together: What should I do?

Well, sometimes it's good to be told what you know you should do. I could email my Primary Care Physician. (I really don't know if I should go to a doctor's office where mostly children are treated.)

I guess none of you will be coming over until the blood test results are back. Maybe you've picked up your smart phone and cancelled your flights to Seattle. Well, if your phone was so smart, she wouldn't have let you book a flight to Seattle in the first place. Rick.


Well right after I posted the above, I did send a email to my PCP. I normally would go to her office for most matters; but I really don't know whether I should go to an office where infants are treated. She can order a blood test at a lab with few patients and almost no children are in the waiting room.

Nevertheless, feel free to tell me to do what I've already done.

yensid683

Coughing is my problem too
I'm 10 weeks post rads, SCC, BOT, HPV+, Stage IVa, just rads and eribitux and I too have started having the dry cough and gagging. I had the very heavy mucus post rads and as my throat has healed the mucus has improved, but in the last couple of weeks I've developed a dry cough that triggers in my throat. Based on the total lack of saliva and not always being able to breathe through my nose, my throat dries out and I start hacking.

Sips of water help but it never really goes away. Could be the dry throat.

BTW, last summer I had a non-cancer issue with my lungs, cryptogenic organizing pneumonia, unknown cause dx with a lung biopsy and fortunately treated with prednizone. That cough would trigger deep in my lungs and not produce anything.

I would contact your doctor for help, self diagnosis does not work.

I hope you will feel better soon.

Peter

Billie67

Tim6003 said:

Hi Billie...
Well...let me jump in here too...

I just KNEW I had spread to the lung cancer 3 months after my last treatment...a spot in my back (upper back) was sore, my lungs hurt (I know that sounds crazy, but they did)...it ws like those times in the past when you had a chest cold or those times you breathed in reall cold air (not sure you can relate to the cold air thingy being in southern Cal) ..

...anyway...I also "developed a cough" ..not as bad as golden described above...but a cough none the less...oh boy did I know I was a goner ..seriously...

Then the PET / CT and it came back with a little hot spot in vocal cords and NOTHING anyhere else

I too had Erbitux and radiation ..nothig else ...I was base of tongue and stage III with one lymph node ...

...my oncologist says that Erbitux really tears you up inside and out ...

I'm no doctor Billie...but I feel you will get a clean PET and I feel the coughs are from dry throat..dry deep down in the throat ...I belive that's was still causes my coughing from time to time ....and I am no 8 months out from my last rad ...have had a clean PET ...a NED CT/w contrast of head and neck and all of my monthly scopes and visual / finger exams have come back good!

Par for the course Billie....whispered a prayer you have a NED PET!!!

Best,

Tim

Tim
The lung and back part you describe is me! My lungs feel like I'm sick but the rest of me doesn't feel that way, except for the ache in my back. Oh and the fact that I "pulled" something in my lower back from coughing.....lovely! Anyway, even my husband says he thinks it's more dryness irritation from my throat but I feel so much like it's coming from my lungs. At this point I don't see calling the dr because I'm getting scanned in 2 weeks.
Do any of you (besides Tim) also have the same lung and back feeling?
Thanks again for allmof the replies.
Billie

katenorwood

yensid683 said:

Coughing is my problem too
I'm 10 weeks post rads, SCC, BOT, HPV+, Stage IVa, just rads and eribitux and I too have started having the dry cough and gagging. I had the very heavy mucus post rads and as my throat has healed the mucus has improved, but in the last couple of weeks I've developed a dry cough that triggers in my throat. Based on the total lack of saliva and not always being able to breathe through my nose, my throat dries out and I start hacking.

Sips of water help but it never really goes away. Could be the dry throat.

BTW, last summer I had a non-cancer issue with my lungs, cryptogenic organizing pneumonia, unknown cause dx with a lung biopsy and fortunately treated with prednizone. That cough would trigger deep in my lungs and not produce anything.

I would contact your doctor for help, self diagnosis does not work.

I hope you will feel better soon.

Peter

add me to the list !
I too get a coughing fit that knocks me down. As I also have asthma I always attributed it to this. Somebody should check into this...as there are alot of us in the same boat (so to speak) Might be circumstantial but...? Katie

osmotar

Gunk
Hi Billie,

About a month or so after all rads ended, I would wake up and it felt like I had a glob od who knows what in my throat, but no cough, I didn't have a mucus issues thru any treatment..any way I would try to cough it up with no luck, it was difficult to swallow liguids when that stuff was in my throat, I found that a cup of tea, not extremly hot but more than warm would seem to break it up. Somedays it was there and others not, I saw my ENT and he looked at my throat and said all was fine, that it was from the rads. For the last 5 months or so, no problems. Hope things clear up for you soon.

Where in S Cali do you live?

Billie67

osmotar said:

Gunk
Hi Billie,

About a month or so after all rads ended, I would wake up and it felt like I had a glob od who knows what in my throat, but no cough, I didn't have a mucus issues thru any treatment..any way I would try to cough it up with no luck, it was difficult to swallow liguids when that stuff was in my throat, I found that a cup of tea, not extremly hot but more than warm would seem to break it up. Somedays it was there and others not, I saw my ENT and he looked at my throat and said all was fine, that it was from the rads. For the last 5 months or so, no problems. Hope things clear up for you soon.

Where in S Cali do you live?

Gunk
I had all the gunk just post treatment, well from the last 3 weeks of treatment thru about 3 weeks after treatment.
I live just south of Los Angeles in Torrance

osmotar

Billie67 said:

Gunk
I had all the gunk just post treatment, well from the last 3 weeks of treatment thru about 3 weeks after treatment.
I live just south of Los Angeles in Torrance

Neighbors
Except for a "few" miles between us we could be neighbors..I'm over here " see me waving: near Phoenix. We west coaster H&N folks should get together sometime.

Billie67

osmotar said:

Neighbors
Except for a "few" miles between us we could be neighbors..I'm over here " see me waving: near Phoenix. We west coaster H&N folks should get together sometime.

:-)
That would great! I used to spend a lot of time in your next of the woods, well in Chandler but then my family moved :-(

ToBeGolden

ToBeGolden said:

Not To Upset ....
I need to say two words: "Whopping Cough". Washington State has an epidemic, worst state in the USA for whopping cough. The Mayo Clinic Web Site says there is a blood test. All together: What should I do?

Well, sometimes it's good to be told what you know you should do. I could email my Primary Care Physician. (I really don't know if I should go to a doctor's office where mostly children are treated.)

I guess none of you will be coming over until the blood test results are back. Maybe you've picked up your smart phone and cancelled your flights to Seattle. Well, if your phone was so smart, she wouldn't have let you book a flight to Seattle in the first place. Rick.


Well right after I posted the above, I did send a email to my PCP. I normally would go to her office for most matters; but I really don't know whether I should go to an office where infants are treated. She can order a blood test at a lab with few patients and almost no children are in the waiting room.

Nevertheless, feel free to tell me to do what I've already done.

Pneumonia
I put this in a separate thread (which probably breaks a rule on double posting): I have pneumonia. The good news is I have antibiotics. Very tired. But there is a light at the end of this tunnel. Rick.

Billie67

ToBeGolden said:

Pneumonia
I put this in a separate thread (which probably breaks a rule on double posting): I have pneumonia. The good news is I have antibiotics. Very tired. But there is a light at the end of this tunnel. Rick.

Oh gosh!
So sorry to hear that Rick, did they do a chest xray to determine? I don't feel like mine is pneumonia because I don't or didn't have any other symptoms? I guess I'll have to wait until my scan on the 24th to know what the deal is with me. I'm glad you have antibiotics tho, please start feeling better soon. And thanks for updating me.
Take good care,
Billie

fisrpotpe

me too
i too cough, but none of them at at consistent times of the day, or month, or season or even year.

but maybe some are and i am just so used to it that i don't even realize i am coughing most of the time.

guess it might just be part of my old old new normal, :-)

john

Barbara B

fisrpotpe said:

me too
i too cough, but none of them at at consistent times of the day, or month, or season or even year.

but maybe some are and i am just so used to it that i don't even realize i am coughing most of the time.

guess it might just be part of my old old new normal, :-)

john

Try a humidifier
My husband had scc BOT one lymph node, chemo and rads (no surgery)one year ago. His last PET:NED. Yeah!!

However, he also developed a terrible dry cough which was strange because he had so much yucky mucus. He thought he had pneumonia, his back hurt so badly. He started chewing xylitol gum to keep his mouth moist and would fall asleeep with the gum in his mouth. He did this intentionally because hh said this way when he woke up he has immediate relief from the dry mouth.

Then our ENT suggested a humidifier. This is working beautifully. He sleeps longer and breathes easier. He is not waking himself up with the dry cough or the dry mouth.

Hope this helps!
Barbara

Billie67

Barbara B said:

Try a humidifier
My husband had scc BOT one lymph node, chemo and rads (no surgery)one year ago. His last PET:NED. Yeah!!

However, he also developed a terrible dry cough which was strange because he had so much yucky mucus. He thought he had pneumonia, his back hurt so badly. He started chewing xylitol gum to keep his mouth moist and would fall asleeep with the gum in his mouth. He did this intentionally because hh said this way when he woke up he has immediate relief from the dry mouth.

Then our ENT suggested a humidifier. This is working beautifully. He sleeps longer and breathes easier. He is not waking himself up with the dry cough or the dry mouth.

Hope this helps!
Barbara

Barbara
Great idea and I am going to try it! Makes perfect sense to me, why do I not think of these things, still have chemo brain I guess :-)
My back is hurting too which is why I've also been so worried. Thanks again,
Billie