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Throat Radiation After-Effects, Aspiration & Suffocating Mucous
I am a 61-year-old woman that finished the last of 35 radiation treatments last March 2020. Since then, I have had pneumonia and other lung infections which was finally attributed to aspiration of solids and liquids after a barium swallow test. In that regard, I had a feeding tube inserted hoping that would be the beginning of lung healing, although this is not the case. It has been horrible, with shortness of breath, and at times rushing to the ER because I could not catch a breath. All this time I have been on one antibiotic after another, going on 6 months now! The last two months have been Doxycycline 100 mg. twice per day. Obviously the feeding tube has not stopped the feeling of having constant Bronchitis and if I stop taking the Doxycycline, within two days the substance in my lungs begins turning in consistency to that of super-glue. I had a bronchoscopy done 10/2020, which found heavy e-coli in my lungs, and a sputum test revealed "MRSA" and "Stenotrophomonas Maltophilia." The pulmonologist and Infectious Disease doctors have both denied me any more antibiotics, and I understand their concerns, yet, they have no suggestions for me.
As I sit here, it is 3:00 a.m., and I can not sleep due to the gunk in my lungs making it hard to breath. If I quit taking the Doxycycline, I will be hospitalized within 2-days time, or at the Emergency Room again, in terms of not being able to clear the mucous and breathe. I have to go to urgent-care about once-per-month to have the antibiotics, and that doctor feels I should be on them until (if) this subsides.
I feel as if no-one cares about this condition, or, they know what it is but do not want to admit the truth that the radiation caused this. It must be aspiration causing this lung condition, as there was nothing wrong with my lungs before having radiation for cancer of the Pyriform Sinus (part of throat). The cancer is supposedly gone now, and I am thankful for that. I was a fitness nut, that exercised and ate a healthy greens diet, plus a non-smoker.
I asked the pulmonologist nurse before Thanksgiving what I am supposed to do with no antibiotics..."just die?" She laughed at that statement. Yet, they offered no alternative, or help. My ENT Doctor scopes me approximately every 3 months, and claims my throat is still extremely swollen, yet the swelling is subsiding very slowly. For 8 months I could only whisper, but now have my voice back. The ENT said he can finally see my vocal cords, but this thick mucous problem goes on. If you put your fingers on the depressed area of your throat--by the Trachea--that is the area where the mucous seems to be lodged. Again, as long as I am on antibiotics, the thick mucous can be coughed up with the help of a nebulizer of 7% saline. If I am not on antibiotics, the mucous turns into a cement-like substance, whereupon nothing will dislodge it. The hospital gave me IV antibiotics twice, which began clearing it up rather fast.
By the way, I have been to two Pulmonologists, and both are stumped. They both prescribed many different inhalers--Albuterol, Symbicort--others, and if this is any clue, these inhalers make my throat worse. In fact, the last time I used the albuterol was in desperation, and it almost closed up my throat totally. The second-opinion Pulmonologist described that reaction as "very interesting." Currently, not taking solids or liquids by mouth, in hopes this will go away.
Sorry to write all that! This has been submitted hoping someone will instruct me as to where to go from here? Another ENT, or another Pulmonologist?
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My condition is not nearly as serious as yours, but I'd say you're right in thinking that this problem you're having was ultimately caused by the radiation. I also had radiation on my neck as well as my head and I have difficulty with swallowing even now that I'm 12 weeks out from treatment. I have to be very mindful when eating or drinking. It's like I can't control where my food and liquids go and they'll frequently go down the wrong way. Fortunately, my cough is strong enough to bring it back up, but it's still probably dumb luck that I haven't had pneumonia yet. This is definitely something no one warned me about it and when I mention it to my oncologist he kind of just bypasses it. I don't know if this is just a theme with oncologists not wanting to admit that their treatments can cause dangerous side effects, but mine also would not admit that the brain swelling I experienced halfway through treatment was caused by the radiation. Even after all other possible causes were ruled out he still would not take responsibility for it.
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1 ReactionKitty, please join the conversations in the Lung Cancer group here: https://connect.mayoclinic.org/group/lung-cancer/
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4 ReactionsI am not very techie . I have a tumor in my lung . I completed radiation/chemo last week . Now I’m on chemo every 2 weeks . I was intebuted and woke Christmas Eve . I am just looking for support . Thank you so much .
Kitty
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1 Reaction@kit621, welcome. Your first reply worked perfectly. Tell us a bit about yourself.
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1 ReactionMy first reply , I hoe this is working ! Are you better now ?
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1 ReactionThanks Jennifer!
Connie what you said I feel the same way I kind of get aggravated just not knowing if what we do to make our selves better by listening to drs is the right thing I don’t know my dr says he does not believe in a lot of medication he feels the Arikayce I’m on for MAC has many positive results and he has many on it so I’m taking his word I worry because like you say others are on the big 3 all I can do is pray. I am going tomorrow to another dr pulmonologist just to see what she says also. My ctle scan my dr ordered is in March 3rd hope that will tell a lot since I’ve been on Arikayce since dec 16th your so right this is all exhausting reading running to drs sometimes I just want to forget but we know we can’t. Connie you I would say need a bronchoscopy done this way they can get into the lungs with a camera and actually see what’s going on in there. Not sure where you live but I do have a dr if you need you can call him the dr who did mine. Write me back will keep in touch also in our updates I’d like to know also how your making out ok have a good day think positive it’s all we can do and enjoy the day we have 😀☀️
Jennifer jr2366, What about the three antibiotics that your suppose to be on...at least that is what everyone says? I sincerely hope and pray you get better. Maybe by Spring, things will begin clearing up. As for me, trying to get my Infectious Disease doctor to test me for MAC, is like trying to pull nails out of hardened cement. I do not understand our medical system and how they treat everyone in a different manner. Isn't there any set of rules ot a protocol for them to abide by? Guess not! The way we have to go to different doctors for answers is exhausting, and it looks like it will be never-ending as I try to find another doctor that will listen to me. Well, lets cheer up because now you know for sure your ailment, and sounds like you are on the right path! Keep me informed and I will do the same. : )
Connie I went to pulmonologist last night and he said I have MAC bronchactasis I also have reflux he gave me omeprazole and I’m on Arikayce for the MAC which makes me congested so he told me take musinex it helps little with my cough so I will know more in a few days how I feel it’s always something I see another dr on Friday to see what she says also and if there’s any other thing I can do to help myself
alleycatkate, Thank-you, good advice!