neck, lung + post rad vent & question

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Clearblue
Clearblue Member Posts: 186
edited August 2011 in Head and Neck Cancer #1
Hello, i havent been around for ages so im going to check in with a vent , gripe and question.

We were just into our 3 month post neck rads. Wifeys neck burns healed really well. Though food tasted like garbage, the mouth sores seemed to be clearing and were almost gone as an issue, believe it or not.

But then, swallowing became difficult , post rad stricture possibly. She was out walking every day,; we were 3 weeks away from pet and could finally and possibly deal with with a small lung mass that showed up on her previous pet. (It was decided to Radiate neck first and then lung.)

We investigated the possibility of dilation and we did a video-flouroscopy barium swallow test to check the severity of the stricture as well as to see whether we could in fact have a dilation so close to post rads. The first swallow went down with some coughing and then she was instructed to take a cup size gulp.

She expressed her reservation at doing this saying that she "usually drinks with a straw", having undergone 2 partial laryn(pharingial)gectomies. cos swallowing is difficult, and aspiration common. But she "succumbed" and then had a MASSIVE aspiration which left her gasping and coughing. One day later, pains in her chest, and shortness of breath. x-ray showed barium filled lungs. This was followed by lung infection and hospitalization for 11 days, antibiotics etc. I cannot tell you how unbelievably irate she was . Then she was released home with oxygen and a week later back to hospital and worsened infection for another 5 days . 20 days later she had a bronchioscope under anaethetic which proved very difficult , resulting in a plummeting drop in saturation and she went into intensive care unit fighting to save her lung form total collapse!

This has been so unbeleiveable because obviously radiating the squamus on the lung is just not on the cards at the moment & its been there waiting to be radiated for 5.5 months! .

After much work and strength sapping efforts, + 4.5 kg weight loss, she breathed her way out if there and is now back at home and trying to exercise daily but still basically o2 dependant adn peaks at 95% saturation.

Neck PET showed nothing new except for the known lung squamus, and also an unexplained "spot" in the pharynx which they said they knew about previousely( though we didnt!)but cannot be checked cos they dont want to risk another aenaesthetic.

SHe did a lung check, and her lung function is really low and there is still slight infection.
In addition she has developed a kind of asthmatic breathing issue, which she feels is completely disturbing her ability to a'walk out" the lung infection adn blocked bronchii form the aspiration.She is now on steroids/chortisone treatment (tablets and inhaler).

She would like to ask whether anyone has had this kind of effect.
Take care to all my friends
Clear

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    WOW
    You guys have been through the mill....

    So sorry for all of the complications. I can only really offer my thoughts and prayers for you both and your family.

    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Skiffin16 said:

    WOW
    You guys have been through the mill....

    So sorry for all of the complications. I can only really offer my thoughts and prayers for you both and your family.

    John

    So sorry, Clearblue. Maybe
    So sorry, Clearblue. Maybe some of the others with more experience about these things than I have, will chime in. I know with this infection I have going on and all this coughing and hacking and wheezing I have got going on, it just awful. So I cannot imagine really have lung cancer and severely diminished lung function.

    Prayers always~

    Sweet
  • Greend
    Greend Member Posts: 678
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    So sorry, Clearblue. Maybe
    So sorry, Clearblue. Maybe some of the others with more experience about these things than I have, will chime in. I know with this infection I have going on and all this coughing and hacking and wheezing I have got going on, it just awful. So I cannot imagine really have lung cancer and severely diminished lung function.

    Prayers always~

    Sweet

    Breathing
    I've had problems - still do- but nothing as severe as this. I too aspirated and had three bouts of pneumonia within three months before my family Doc told me to "STOP eating through my mouth because I was aspirating into my lungs". Although I had a tube my "super" ENT (said with very much affection)at UAB wanted me to swallow as much as possible in order to keep my swallowing working so I was bound and determined to continue trying to eat. Around Jan 2011 I gave in and now do 100% nutrition through a G-tube however I am still able to swallow small sips of water which I use to swallow crushed up meds and for the wonderful dry-mouth. The cause of this, and I'll screw up the spelling so I'll use lower Alabama slang, is that the muscles that push/pass the food through the throat to the stomach do not function in my "mid-range". The muscle that starts the process works fine and the muscle at the very end (near the stomach) work great but all the others in the middle have ceased functioning. This is a long term after effect from the radiation. To determine this I had to have a test done where they ran a tube through my nose into the stomach and then had me swallow small sips of water. The pressure is measured against the tube to give them a good picture as to how things are working, they also found I had to double swallow every time in order to get the stuff on its way. I guess this test is either fairly new, rare, or expensive because in this region there are only two hospitals that have the equipment, Birmingham and somewhere near Atlanta.
    Hope she gets better and we are all pulling for her.

    Denny
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
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    Clear
    Gee that's one tough road you've been on. Hope things start improving for your wife and soon. Positive thoughts and energy your way. Cheers.

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Clear
    I am having a lot of problems with my Lungs but think it is due to the medications I am taking for the problem with fluid in the brain. Sometime it is like I just can’t get enough air, I am hoping to get off of these meds soon to see if there is a different, if not I will need to see a lung doctor soon.

    Keeping your Wife in my prayers
    Hondo
  • buzz99
    buzz99 Member Posts: 404
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    Post rad
    You two have been through so much. While I cannot address your questions, I want you to know Buzz and I are thinking of you and hoping for improvement in your wife's condition. Karen
  • Pam M
    Pam M Member Posts: 2,196
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    Hope Things Look Up
    Man - I can't imagine being told to take a cup sized gulp when I did my barium swallow test - seems crazy. Very sorry you all are having to go through this.
  • Clearblue
    Clearblue Member Posts: 186
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    Pam M said:

    Hope Things Look Up
    Man - I can't imagine being told to take a cup sized gulp when I did my barium swallow test - seems crazy. Very sorry you all are having to go through this.

    marathon
    It appears we have developed Asthma, residual damage from the original aspiration.
    So inhalents and steroidal to try open things up there, though not very effective.
    she says its like breathing through a straw in your mouth!
    Because saturation has improved somewhat and clinically, shes walking and eating better, despite the dissapointing return of mouth & throat sores, direction is twards steriotactic radiation on the lung mass. We understand that rad treatmetn of one lung ofetn affects the other in form of mini pneumonia.
    So we live from from risk to risk.
    Yours
    Clear.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Clearblue said:

    marathon
    It appears we have developed Asthma, residual damage from the original aspiration.
    So inhalents and steroidal to try open things up there, though not very effective.
    she says its like breathing through a straw in your mouth!
    Because saturation has improved somewhat and clinically, shes walking and eating better, despite the dissapointing return of mouth & throat sores, direction is twards steriotactic radiation on the lung mass. We understand that rad treatmetn of one lung ofetn affects the other in form of mini pneumonia.
    So we live from from risk to risk.
    Yours
    Clear.

    Prayers
    You guys are continued in my thoughts and prayers for some relief and a solution to help provide comfort.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Skiffin16 said:

    Prayers
    You guys are continued in my thoughts and prayers for some relief and a solution to help provide comfort.

    Best,
    John

    Hi Clear
    I have you both everyday in prayer my friend and you are so right we live day by day with this monster at the door step.

    Hondo
  • arndog64
    arndog64 Member Posts: 537
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    Hondo said:

    Hi Clear
    I have you both everyday in prayer my friend and you are so right we live day by day with this monster at the door step.

    Hondo

    I will be praying for you
    I will be praying for you and your wife.
  • Clearblue
    Clearblue Member Posts: 186
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    arndog64 said:

    I will be praying for you
    I will be praying for you and your wife.

    tnx , good to know ure here, even if i dont give in kind.

    I just said to wifey that all we want is to have a quiet day, with no discomfort.
    but there's always something .

    How tiring and how awe inspiring that you all push ahead in the marathon from day to day.

    (Hondo, just saw yr July 15 post here. Any change?)
    Clear.
  • Jan Trinks
    Jan Trinks Member Posts: 477
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    What a Roller Coaster
    Clear:

    What a roller coaster ride y'all have been on. Can't give you much info on the situation but can pray for you and wifey and hope the ride starts and stays uphill! God Bless!

    Jan (Basketcase)