Compression of tumor on the trachea causing wheezing, ? possible stent to b

I am currently a stage 4 NSCLC and they tell me I am in a remission after having radiation first and then chemo. This was all completed about 2 years ago and I really have been without too much trouble until now,I have had my ups and downs forever it seems, but this time it is a real downer, My tumor in my right lung is compressing my trachea making it now kind of difficult for breathing, My wheezing is coming not from down in the lungs, but from it seems my throat, I can not lay down to sleep at night and certain positions I am in while trying to lie down make a difference. The doctor found this on an xray I had taken from an ear, nose and throat doctor about 10 days ago. This ear, nose and throat doctor got the results and had his nurse call me and tell me I needed to see my oncologist right away it was way too much for him to deal with and she said it looked as if something was collapsing my trachea.I called my oncologist who looked at the new xrays from this doctor and compared them with my own CT scans he has at his office, he does not seem to think there is any change at all and tells me he will have their thoracic people do a bronchoscopy if I really want them too, but he doesn't think it is necessary, he thinks this breathing problem is all related to my last episode over a month ago with pneumonia and bronchitis. This has never felt like this in my throat and bronchus before when I have had bronchitis or pneumonia in the past. I was putting off going back to see my oncologist hoping it will go away, it is not going away, it is getting worse. I have to stop all plans and go through feeling very nauseated at times, and then this continual real loud wheezing is embarrassing to go someplace let alone make me feel like I am choking.I take Coumadin for blood clots so get scared that with any kind of invasive procedure of bleeding to death. Is there anyone out there with this problem and did anyone have a stent put in. This sten was mentioned to me previously, at that time I really didn't pay much attention because I was scared to death to even think of having some foreign body put in my windpipe to keep it open, so since I hadn't had any problems up until just recently I never read up on it or even inquired about it, but now.. I am very fearful something has got to be done or i am going to die a slow and very uncomfortable death, I think this tumor is not in remission anymore and maybe did grow a very small amount, maybe not visible on an xray but enough to put more pressure on my trachea and it being enough to just start making me gag, it is horrible, if there is anyone out there going through this, or has been through this please contact me, i am planning on monday of calling the oncologist if I don't go to the emergency department before monday morning comes. I almost went today had a very bad episode just trying to get dressed and go out for some groceries, I changed my clothes and put back on my comfortable pajamas and just sat on the couch scared again.Thanks from Sandy

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Hi Sandy,

I had a similar situation to you with a large tumor (10 cm) that invaded two lymph nodes that wrapped around my trachea. I was Stage IIIa, inoperable due to the lymph nodes. I had concurrent radiation (33 sessions) with chemo.

At the time I was diagnosed, I had had a horrific cold for about a month with a lot of wheezing in my throat and sinuses - I even *gurgled*.

I went to the doctor looking for antibiotics, thinking the cold had turned into a sinus infection. Having had bronchitis (numerous times) and pneumonia (three times) throughout my life and also sinus infections, I knew I did not have bronchitis or pneumonia.

They x-rayed me discovered the mass in my lung.

The doctor assured me that all of my symptons - ALL of them, were the result of the mass, and that nothing would help me, not antibiotics, not a cough syrup, nadda.

Well, he was wrong because I did have a GD cold and sinus infection but not one doctor cared about that because I had a MASS in my lungs so I had to suffer with that for months until a doctor in emergency finally gave me antibiotics when I developed a fever when on chemo. Really. Still pisses me off.

Back to the wheezing and gurgling! When I was going through all the pre-tests before treatment, I was convinced they would also find cancer in my throat because of the incredibly loud wheezing and gurgling that sometimes made it impossible to sleep it was so loud. I had no wheezing in my chest. Just the throat.

I used to think it was like my poor body was singing me an incredibly mournful song. I should have tape recorded it, it was so haunting.

Then treatment started and the wheezing/gurgling got worse (as did my coughing) as the treatment progressed. The tumor was shrinking, breaking up a bit I suppose, and my esophagus, of course, was burned from the radiation due to the two lymph nodes wrapped around the trachea.

I remember many times sitting on the edge of my bed late at night coughing up blood and phlegm and thinking I wasn't going to make it through treatment.

I tried every over-the-counter product and every home remedy (lemon and honey tea, ginger, salt and water up the nose, etc. etc.)

I also experimented with every possible sleeping position until I found one that helped alleviate the wheezing somewhat - for me that was three thick pillows and on my left side.

Finally, my radiologist gave me Hycodan syrup. It really helped.

It wasn't until a few months after treatment that the wheezing in my throat went away.

So, you recently had bronchitis and pneumonia, and your onc has reviewed the new x-rays from the ENT doc with his CT scans and says he thinks your wheezing and choking (I had that too, choking, and SOB, which I still have) is related to your recent bronchitis and pneumonia and that he doesn't see a change in your tumor? (Hoped I summed that up correctly!)

I would trust his judgment of the situation.

CT scans give more information than x-rays, and an ENT specialist doesn't treat lung cancer. But I don't understand why your onc would order a bronchoscopy at this point. I'm curious, what would be the point of it?

And, we all know our own bodies best, so if you feel afraid, go to the ER or get a second opinion.

I just wanted to reassure you that my loud wheezing and gurgling was not an indication of cancer in the throat or of the tumors growth, in fact it got worse as the treatment progressed and the tumor shrank.

Now, in retrospect, and being a little older and little wiser in the ways of lung cancer and how it is treated, I am really astonished that my wheezing/gurgling and coughing/choking were not taken seriously by my onc at all and only by my radiologist due to the esophagus burn.

If I was starting this weird lung cancer journey over, I would insist on help for those symptoms, besides Hycodan. I've read here of other people getting prescriptions to help thin mucus, of prescriptions for acid reflux (caused by radiation) which can cause night coughing, etc. Ativan for anxiety and to help sleep, etc.

My onc and radiologist don't really seem to care about those symptoms, probably because they knew they would pass with time, but they didn't explain any of that to me.

In fact, when I was first starting treatment, my onc told me that chemo would improve my cough. Then I went to an appointment with my radiologist and he told me that the radiation would make my cough worse. And these guys work as a team!

Sigh.

As Highland Guy says, there are few oncs and radiologists who specialize in lung cancer. So even though my team is at a cancer centre, there are not any specialists in just lung cancer where I am. It can be very frustrating.

Thankfully we have this group and the Internet. Knowledge is power.

Anyway, Sandy, thank you for giving me a chance to vent, and I sure hope you're feeling better soon.

Kelly

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Hi mom, I just read this and see it's dated today. I think you should go into ED if it's geting that bad. A least there they can do all the proper tests, instead of scheduling them and going back and forth. What ended up happening? I tried getting a hold of you earlier and left a message, than called again later, but you must of been on the phone as that "sorry you can't leave a message came on". I'm home tomorrow and can take you if you want to run up there. Just give me a call, I'll load up my books, quiz you along the way, and we'll make a day of it. Nice and warm in the ED,lol! At least we can get a good cup of coffee! I hope your doing better tonight. So call me if your up to it tomorrow. Love, Steph

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Well Kelly thank you so much for easing my worries! What you said about the GERD is what I am wondering if this is possibly it also, because today i was getting ready to go out shopping for groceries and all of a sudden the wheezing was so loud and I kept getting this lump in my throat like i was going to vomit and hot flashes real bad, I popped an ativan and went and sat on the couch and did a breathing treatment and just rested a couple of hours sitting up, finally all of it went away even the wheezing let up, thats what makes me wonder what in hell is going on,l why is it real bad sometimes and then not real bad other times?
The bronchoscopy is just what they told me I may have to have done and then have a stent placement if it is compressing the trachea that much I may need to have that done, although the oncologist said reading my xrays that it didn't look to him like anything had changed, I am just wondering then why this loud wheezing and scraping feeling and dryness in my throat. It sounds like you had exactly what I have but yours was all based around your treatments, my treatments have been over for over 2 years,k I am supposedly in either remission if this is one or NAD.
Thanks for writing you are a true Godsend.
From Sandy

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Wow that was fast that you got on this site, i have been keeping busy on here with all of these people, good picture of you and Steve, you may find this helpful for yourself since many are daughters writing that lost their dad, some real sad. I had a horrible time again today with this choking and we were going out so I got ready and then had to stop and not go out, I took some extra pills and rested of course sitting up, and then it subsided so I got dressed again and we went out to Walmart, i tried calling you back and left a message on your phone. No I am going to wait it out and call Dr. Pandya on Monday and see what to do next. Sometimes it gets bad enough and I think I should go and see someone right away but if I relax and just breathe and don't get up and move around it isn't bad, at night is the worse but just reading what this lady wrote to me sounds good she had the same thing, Dr.Pandya said he really wasn't worried about it, but if it really bothered me that I could see one of the thoracic surgeons at Strong, not out this way. I am so shocked you found this site, i didn't even know if it would work with you getting it or not, just playing around on here.
Love Mom

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Hi Sandy,

Yes, get checked out for GERD, it can cause horrible coughing at night. Even though I'm mostly healed from the radiation now, I still eat early and very little after 6 p.m. Nothing too spicy or heavy.

Thanks for the info on the stent. It sounds like something I may need someday in the future as my tumor is still there, albeit smaller.

And, Ativan is a life saver at times.

Glad you're feeling a bit better, and hope you get past all of those horrible symptoms soon. They are a drag.

Kelly

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Thanks you really helped me a great deal, it is always comforting to know you are not alone. good luck with your problem too.The picture posted is adorable it looks like a picture for an upcoming movie. Seriously, can't you just see that on the jacket of a movie rental package?
from Sandy

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I forgot one thing. During treatment I discovered that the steroid I had to take for four days each infusion with cisplatin, called decadron really improved all my throat symptoms. Decadron fights inflammation.

Thanks about the picture - I think they're adorable too, but then they are my nephews! Actually, what you see posted here are just two of us, in the forefront is my 10-year-old nephew Jacob and behind him is me, to the right is eight-year-old Zack, but when I uploaded the pic he got cut out, I guess it was too big. Not a techie. It was taken when I was recuperating from treatment, specifically anemia, and had lost most of my hair.

Since my head is so big for a woman (ha ha it's true!) size 7 3/4 male, I've never been able to find a woman's hat to fit me, let alone a wig. So, that tam-looking hat I'm wearing is actually a man's hat that has a little peak on it, like a Greek fisherman's hat, which I wore backwards. It's made of wool, and warm, and at least a little stylish looking.

Think I started a new trend around here!

And, since I know nothing about taking pictures, Jacob and Zack just piled around me at my computer, which has a built-in camera, it's an Apple iMac, and they took it for me! I do believe they know a way more about my computer than I do!

I have 17 nieces and nephews but see Jacob and Zack the most, almost every day, and I love them both dearly. I'm one very lucky aunt.

Kelly

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I am surprised I even got this problem in my throat because it actually all started after being put on a steroid, the one they put you on for a few days and it is tapered off, i though for sure this would be great for helping fight my symptoms with pneumonia actually maybe it did and I would have been in really bad shape without it. I also am on the inhaler Beclometahsone which slightly improved this problem but not completely. I can only see your one nephew in the picture but he is cute, I couldn't tell you had a hat on but it does look stylish. I bought an expensive wig but never wore it, I also have a larger than normal for a female head but Iwore different colored handkerchief like turbins, I didn't mind a bit, so easy not to have to do my hair everyday, and I always looked nice because I wore makeup everyday and put on a nice big pair of earrings and alway matched my short sets with my turbin and a colorful straw hat.
From Sandy

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You must have looked awesome, Sandy! I put on makeup everyday, too. Just made me feel better.

Please let us know how it goes with your doctor. I sure hope they find a solution for you!

Kelly

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hi Kelly,
You know I feel so much better, I was outside all afternoon and still have the mucous in my throat but the wheezing has gone down somewhat and am not feeling as if I am choking, I am so happy!!
I had some bad news today, one of my phone cancer buddies died this morning she was in her early 50's, didn't expect it to happen to her, she died peacefully. I am sad in a way but glad also because she did start to suffer, and no suffering to me is worth it.
from Sandy

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That's great that you're feeling better today, Sandy! So sorry to hear about your friend, though, but glad she is not suffering anymore.

Kelly

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Thanks for your support Kelly, Have a good night and rest peacefully. I am coughing again but coughing finally with some relief, I am able to get some of the mucuos out! I can feel the wheezing decreasing, I am so thrilled by this because it has been going on for so long, i can not believe the most mysterious things happen to us with cancer,.or maybe it is just older age, or even the COPD. You would think being a nurse I might have some idea, not a clue, where did all my experience go to, down the toilet? You actually are the one who made me think my own symptoms could possibly be from GERD.
Sandy

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