nerve damage (formerly titled: 'paraneoplastic syndrome?')

bonefamily
bonefamily Member Posts: 27
edited November 2012 in Head and Neck Cancer #1
My sweet 50yr old husband (Nelson)has had more than his share of difficulties during and following treatment. The last two months have seen him in the hospital 4 times with presumed medication reactions, uncontrolled coughing, and then a blood clot with a side of cellulitis from a peripheral IV. Thankfully, the clot is superficial and there is no need for anticoagulants. Finally, all the acute events have cleared and his med onc can take a good look at the 'big picture' of all his symptoms and begin to consider a larger problem may be afoot. He is almost 8 weeks out from completion of 9 weeks of induction chemo, and 33 rads with concurrent weekly chemo for BOT stage 4 with bilateral lymph node involvement.

His symptoms are bilateral weakness and stiffness of gait, fine motor difficulty of coordination in his hands, transient confusion, chronic cough, occasional double vision and incontinence of urine. She has never had anyone with the degree of cough he has experienced and the difficulty getting it under some control as well as the other symptoms concurrently. The thoughts are that there is a neurological basis for all he is experiencing. He is having a MRI of the brain and cervical spine, hopefully tomorrow. He will need to be sedated since he cannot stop coughing for the 2 hours needed for the MRI. He does not cough in his sleep, thank goodness.

His symptom profile most resembles paraneoplastic syndrome, but that usually appears before the cancer is discovered. Radiation myletis is a possibility, but he is not experiencing the normal 'electric shock' type symptom that indicates that problem. So, we are left with either a new cancer causing the paraneoplastic syndrome or some other neuro problem. Maybe chemo side effects too. She called him an 'enigma'. He is not on any medications that can explain what is happening. We are scared and confused.

Has anyone experienced this type of symptom pattern or anything similar? The walking/coordination difficulty is the most troublesome problem at the moment. It seems to be slowly progressing. We hope to get the MRI and then see the neurologist this week.

Any input is appreciated!
Kim

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Kim
    His story is further proof that we just have to keep marching forward until we come out the other end of this mess. I'm sorry for the problems. You are right, it would be unusal for a paraneoplastic syndrome to manifest after treatment. Most of these are seen before diagnosis, and if anything get better with treatment. The cough is kind of a wierd situation over and above everything else. It will take a very thorough evaluation to come up with answers for you, and the MRI will be pretty helpful in ruling out some of the scarey possibilities. There have been a few others post results similar to your situation recently. Mrs Arndog is one that comes to mind. Turned out her husband did not have tumor explaining the situation, but it took awhile to come to a proper diagnosis. I think her husband was found to have infectuous bacterial endocarditis, which ultimately was treatable with long term antibiotic therapy. but it took a long time to come up with this....

    I wish I could be more help to you, but this is one of those situations that will just have to wait upon the experts doing their diagnostic thing. It does sound like your husband is getting the concern he deserves. Wishing you the best.


    Pat
  • bonefamily
    bonefamily Member Posts: 27
    #3
    longtermsurvivor said:

    Hi Kim
    His story is further proof that we just have to keep marching forward until we come out the other end of this mess. I'm sorry for the problems. You are right, it would be unusal for a paraneoplastic syndrome to manifest after treatment. Most of these are seen before diagnosis, and if anything get better with treatment. The cough is kind of a wierd situation over and above everything else. It will take a very thorough evaluation to come up with answers for you, and the MRI will be pretty helpful in ruling out some of the scarey possibilities. There have been a few others post results similar to your situation recently. Mrs Arndog is one that comes to mind. Turned out her husband did not have tumor explaining the situation, but it took awhile to come to a proper diagnosis. I think her husband was found to have infectuous bacterial endocarditis, which ultimately was treatable with long term antibiotic therapy. but it took a long time to come up with this....

    I wish I could be more help to you, but this is one of those situations that will just have to wait upon the experts doing their diagnostic thing. It does sound like your husband is getting the concern he deserves. Wishing you the best.


    Pat

    MRI pushed back
    Thanks Pat. He has a full cardiac workup with the last hospital stay and his blood cultures were clean. So no infection other that the cellulitis at the clot site.
    Since he can't stop coughing long enough for the test, we have to wait until next Tuesday so he can be sedated. He's so tired, frustrated, depressed. Every day is like that movie Groundhogs Day. Nothing gets better.

    Please keep us in your prayers, everyone!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    bonefamily said:

    MRI pushed back
    Thanks Pat. He has a full cardiac workup with the last hospital stay and his blood cultures were clean. So no infection other that the cellulitis at the clot site.
    Since he can't stop coughing long enough for the test, we have to wait until next Tuesday so he can be sedated. He's so tired, frustrated, depressed. Every day is like that movie Groundhogs Day. Nothing gets better.

    Please keep us in your prayers, everyone!

    it seems like Groundhog's Day
    but every day brings you that much closer to a solution. You two have to plod along here, one day at a time. You know, I've had about as much treatment as most around here, lol. I remember how lonely the days were back in the fall of 2010. I had this malignancy pop up on the floor of my mouth, and since I had just had a negative exam, the ENT oncologist thought he could do an outpatient excision and get wide enough margins to cure me. I woke up after a few hours of outpatient surgery, to find I had a defect in the floor of my mouth large enough it couldn't be closed, and that I'd have to wait about three weeks to have a definitive radical surgery. One of those 14 hour long commando surgeries where you wind up in ICU for awhile after, and it is months to heal from. Not much fun. But time passed, and although the road has been pretty bumpy, I'm still here.

    Wishing you the best.
  • arndog64
    arndog64 Member Posts: 537
    #5
    longtermsurvivor said:

    it seems like Groundhog's Day
    but every day brings you that much closer to a solution. You two have to plod along here, one day at a time. You know, I've had about as much treatment as most around here, lol. I remember how lonely the days were back in the fall of 2010. I had this malignancy pop up on the floor of my mouth, and since I had just had a negative exam, the ENT oncologist thought he could do an outpatient excision and get wide enough margins to cure me. I woke up after a few hours of outpatient surgery, to find I had a defect in the floor of my mouth large enough it couldn't be closed, and that I'd have to wait about three weeks to have a definitive radical surgery. One of those 14 hour long commando surgeries where you wind up in ICU for awhile after, and it is months to heal from. Not much fun. But time passed, and although the road has been pretty bumpy, I'm still here.

    Wishing you the best.

    My husband had all the
    My husband had all the symptons you have mentioned except for the cough. We sent him to a neurologist and they did a scan of the brain/stem. He has nerve damage from the chemo/rads.
  • bonefamily
    bonefamily Member Posts: 27
    #6
    arndog64 said:

    My husband had all the
    My husband had all the symptons you have mentioned except for the cough. We sent him to a neurologist and they did a scan of the brain/stem. He has nerve damage from the chemo/rads.

    Thanks for the response!
    So what happened after the discovery of nerve damage? Has he improved or are we possible looking at a new normal?
  • Pam M
    Pam M Member Posts: 2,196
    #7
    Sometimes "Special" Sucks
    Sorry Nelson is an enigma. Sorry you all are being put through the wringer - it's surely a big bucket of stress you all did not need on top of everything else. Hope it starts to ease soon.
  • bonefamily
    bonefamily Member Posts: 27
    #8
    Pam M said:

    Sometimes "Special" Sucks
    Sorry Nelson is an enigma. Sorry you all are being put through the wringer - it's surely a big bucket of stress you all did not need on top of everything else. Hope it starts to ease soon.

    stop being a special snowflake!
    We saw Nelson's med onc today. After consulting with many other colleagues, the thinking is that he has brain stem swelling from the rads. He had some far back cervical nodes that needed zapping, so that does make some sense. His symptoms are not exactly textbook, but we will know for sure after the MRI. It may at least explain the constant cough. The brain stem is responsible for all your body's basic reflexes and 'life support' and a cough falls in that category to protect your airway when asleep, etc.

    In the meantime, they have started him on mega steroids. If the diagnosis is correct, that is what they would do anyway to help the swelling. If not, it really wont hurt anything for the few days it will be until the MRI results.

    So we are battening down the hatches for the drug side effects! Maybe since he feels so bad, the energy and appetite boost may work out ok!

    Anybody take dexamethazone for a similar problem? He's doing 4mg every 6 hours. Pretty potent.
  • bonefamily
    bonefamily Member Posts: 27
    #9
    Pam M said:

    Sometimes "Special" Sucks
    Sorry Nelson is an enigma. Sorry you all are being put through the wringer - it's surely a big bucket of stress you all did not need on top of everything else. Hope it starts to ease soon.

    stop being a special snowflake!
    We saw Nelson's med onc today. After consulting with many other colleagues, the thinking is that he has brain stem swelling from the rads. He had some far back cervical nodes that needed zapping, so that does make some sense. His symptoms are not exactly textbook, but we will know for sure after the MRI. It may at least explain the constant cough. The brain stem is responsible for all your body's basic reflexes and 'life support' and a cough falls in that category to protect your airway when asleep, etc.

    In the meantime, they have started him on mega steroids. If the diagnosis is correct, that is what they would do anyway to help the swelling. If not, it really wont hurt anything for the few days it will be until the MRI results.

    So we are battening down the hatches for the drug side effects! Maybe since he feels so bad, the energy and appetite boost may work out ok!

    Anybody take dexamethazone for a similar problem? He's doing 4mg every 6 hours. Pretty potent.
  • bonefamily
    bonefamily Member Posts: 27
    #10
    bonefamily said:

    stop being a special snowflake!
    We saw Nelson's med onc today. After consulting with many other colleagues, the thinking is that he has brain stem swelling from the rads. He had some far back cervical nodes that needed zapping, so that does make some sense. His symptoms are not exactly textbook, but we will know for sure after the MRI. It may at least explain the constant cough. The brain stem is responsible for all your body's basic reflexes and 'life support' and a cough falls in that category to protect your airway when asleep, etc.

    In the meantime, they have started him on mega steroids. If the diagnosis is correct, that is what they would do anyway to help the swelling. If not, it really wont hurt anything for the few days it will be until the MRI results.

    So we are battening down the hatches for the drug side effects! Maybe since he feels so bad, the energy and appetite boost may work out ok!

    Anybody take dexamethazone for a similar problem? He's doing 4mg every 6 hours. Pretty potent.

    Bumpity bump...
    In the hope someone has any additional experiences similar to ours!

    Thanks!
  • katenorwood
    katenorwood Member Posts: 1,912
    #11
    bonefamily said:

    Bumpity bump...
    In the hope someone has any additional experiences similar to ours!

    Thanks!

    Just wanted to say
    that my prayers are with you all through these bumps and bangs ! Katie
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    bonefamily said:

    Bumpity bump...
    In the hope someone has any additional experiences similar to ours!

    Thanks!

    no experience really comparable
    I have been on long term steroids. That was a hoot. I couldn't sleep. I'd go to bed at 11PM, wake up at 2AM. Every night. Not tired at all. Three hours of sleep. This was right in the middle of my chemo/rads too, so I should have been tired, but I wasn't. I'd troll the internet, and Skiffin and I would email each other a bit. That was a pretty low grade steroid reaction, but it blew my wife's mind to see how energized I was....

    Pat
  • DKHOLT
    DKHOLT Member Posts: 1
    edited October 2020 #13
    arndog64 said:

    My husband had all the
    My husband had all the symptons you have mentioned except for the cough. We sent him to a neurologist and they did a scan of the brain/stem. He has nerve damage from the chemo/rads.

    Radiation

    Hello,

     

    i just joined this group and found your thread. how is your husband?  i had radiation to my c-spine in 1996 for a csoine tumor and 2 surgies, i lost use of my right hand and other nerve issues which were stable for many years until recently I have new issues , i can't find any one to connect too that is experiencing the same 20+ YEARS later, hoping for a connection, wishing you all well.

  • Ag123
    Ag123 Member Posts: 54 Member
    edited October 2020 #14
    Hi Bonefamily

    I'm sorry that your husband is dealing with so much. 

    I can image how hard it is to keep up with everything on top of the worries you must be having.

    If it makes you feel a little better, my dad (who beat stage IV with radiation and chemo 3.5 years ago) always and still gets "odd symptoms" that his oncology team fail to explain. He also had nagging cough for 2 years now that never stopped. His CT scans are ok so we're just thinking it's COPD. But nobody knows for sure. He has worsening dysphagia. And just like you I was confused because I thought this isn't the "right time" for this kind of symptoms to occur.. it turns out you can still get delayed effects from radiation that cause neurological defects and fibrosis and such. This can happen years later.

    You guys sound like you're in touch with his oncology team, which is a great step. I hope the swelling goes down and he feels better. 

     

    There is always a solution as long as you can figured out the problem.

     

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