Sinonasal adenocarcinoma

Asher71
Asher71 Member Posts: 2
in Head and Neck Cancer #1

Hi everyone, I'm brand new here.  I'm wondering if someone went through anything somewhat similar.   So my husband, 44 yrs old, was diagnosed with sinonasal adenocarcinoma in March.  He had surgery to remove it. his surgeon rec was to do radiation for 6 weeks and chemo once a week. We heard about proton beam therapy and we were told that it has less side effects.  So we went to MSKCC to get the treatment there thinking that they must have seen cases like his.  Turns out they never did. They couldn't agree on whether to give him chemo or not. But being that his surgeon recommended it, we elected to go through with it.  He has completed 10'sessions and he just started experiencing severe neck pain and difficulty swallowing. We called the doctor on call who basically said take the leftover pain medication that you have from surgery. Does anyone have similar diagnosis? And also those getting radiation near neck and mouth, is there anything to do to alleviate all this pain?

 

thanks

Comments

  • stevenpepe
    stevenpepe Member Posts: 234
    #2
    I just completed 10 sessions

    I just completed 10 sessions of 30, as well, for tongue cancer. I am not getting chemo. My mouth is getting pretty sore and I feel a knot of pain when I swallow. So far, I am still eating solids.

    I am very keen to oral hygiene so I am continuing rinsing with saline solution, Biotene, and a steroid gargle prescribed for me. It's called Dexamethasone. It's very helpful. I am also taking Gabapentin, a pain reliever. I'm trying to avoid the narcotics as long as possible.

    My personal suggestion is to have your husband try his best to keep eating. He doesn't want to lose his swallowing function which may require a feeding tube.

    I also find the pain comes on more in the evening. My mother used to say the night air brings out pain. Maybe she was right because I am much better during the day. I wish you the best.

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited May 2016 #3
    He needs to see his ENT....

    The neck pain can be from radiation....it's quite common....and the difficulty swallowing may also be from radiation.  The ENT can check to see if his esophagus is in need of stretching.  There are people who have this done several times a year.  He's not very far out of treatment and that's good, as the muscles can get harder and therefore harder to stretch (or impossible). 

    Another plus with being so close to the end of treatment.  My RO put me on Trentall...400 mgs 3 times a day....along with 400 ui's of Vitamin E.  This supposedly can keep the muscles in the neck supple, and ward off fibrosis.  I've had radiation twice on the same side of the neck, and that's why they are concerned with fibrosis....but rads can do it the first time around, too.  Also, there are exercises for the neck to stretch those muscles to help keep them supple.  Somebody posted them a couple years ago...I'll see if I can find them.

    Get thee to the ENT!!

    p

  • wmc
    wmc Member Posts: 1,804
    #4
    Welcome to H&N group

    Welcome and also sorry you need to be here. I am not familiar with that one so hopefully someone is and can offer help.

    Bill

     

  • Asher71
    Asher71 Member Posts: 2
    edited May 2016 #5
    phrannie51 said:

    He needs to see his ENT....

    The neck pain can be from radiation....it's quite common....and the difficulty swallowing may also be from radiation.  The ENT can check to see if his esophagus is in need of stretching.  There are people who have this done several times a year.  He's not very far out of treatment and that's good, as the muscles can get harder and therefore harder to stretch (or impossible). 

    Another plus with being so close to the end of treatment.  My RO put me on Trentall...400 mgs 3 times a day....along with 400 ui's of Vitamin E.  This supposedly can keep the muscles in the neck supple, and ward off fibrosis.  I've had radiation twice on the same side of the neck, and that's why they are concerned with fibrosis....but rads can do it the first time around, too.  Also, there are exercises for the neck to stretch those muscles to help keep them supple.  Somebody posted them a couple years ago...I'll see if I can find them.

    Get thee to the ENT!!

    p

    Thanks for all your advice! 

    Thanks for all your advice! 

    Hopefully we will see the dr tomorrow who can suggest something.

    hes so down right now and upset from all the pain that he wants to discontinue treatment. 

     

  • Kenny-
    Kenny- Member Posts: 99 Member
    #6
    This is really rare

    Asher71, 

    This is really rare, at least from what I've gathered so far as I couldnt' find much information on it. May I ask how did you found out about it? The reason for my enquiry is I'm just taking precautions. My CTs it was completely opacifiedMy ENT is fairly confident I got nothing maximilary sinus (nothing showed up on PET), which is good news but I just wanted to check out for myself. 

    Did you do an actual biospy and PET? 

    Thanks for sharing your experience.

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