Adnoid Cystic Carcinoma and side effects

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Lucky933
Lucky933 Member Posts: 6
in Head and Neck Cancer #1

Hi everyone! I am new here and looking for support. I was diagnosed of ACC in Feburary 2016 and had surgery to remove my leftside submandibular gland and some lymphe nodes. I was margin positive and the cancer was high grade. I went through 30 radiations (5x/week for 6 weeks) which ended in May 2016. I chose not to do chemo as I was told ACC does not respond to chemo well. I was on liquid and pureed food for almost 4 months. It took me 5+ months for my tongue to visually look better (the greenish scar disappeared). I still feel burning pain in my tongue when I eat, specially the salty and peppery food. My left face and ear constantly feel numb.

What bothers me the most is what I call the nerve pain on my left side face where I had the radiation. It started a couple months after the radiation had finished. The pain is not constant, seems be triggered when I am physically active, like coughing, exercising, standing up from a long sitting, moving quickly, etc. The intensive pins and needles pain are felt by the left side of my face, my lower teeth and my tongue. It is so strong that I usually have to stop what I am doing. The pain lasts about 1-2 minute and slowly goes away. The MRI showed that there were no tumor growing on a nerve, so I guess this must be caused by the radiation (but why not during and right after the radiation?). I am wondering if anybody else has experienced nerve pain after radiation, will it get better over time? What can I do to ease the pain, etc.

Despite all these, I am getting and feeling better each day, even though the progress seems awfully slow.

 

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  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    Welcome

    Lucky933,

    Welcome to the H&N forum, sorry you find yourself here.

    The weird stuff to do with your tongue and taste are normal for some, it took me 7 months for my semi-normal taste buds to kick back on.

    The pain is another thing. The delay of 2 months after rads may be a good thing, it might point to something else being the cause, other than radiation.  Nerve damage caused by rads is difficult to fix and problems usually are made clear by the MRI.  Does your doctor have any other ideas?  If it persists you could always ask for a 2nd opinion.

    With lucky in your name, you must feel somewhat fortunate and I hope you are.

    Matt

  • Lucky933
    Lucky933 Member Posts: 6
    edited December 2016 #3
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    CivilMatt said:

    Welcome

    Lucky933,

    Welcome to the H&N forum, sorry you find yourself here.

    The weird stuff to do with your tongue and taste are normal for some, it took me 7 months for my semi-normal taste buds to kick back on.

    The pain is another thing. The delay of 2 months after rads may be a good thing, it might point to something else being the cause, other than radiation.  Nerve damage caused by rads is difficult to fix and problems usually are made clear by the MRI.  Does your doctor have any other ideas?  If it persists you could always ask for a 2nd opinion.

    With lucky in your name, you must feel somewhat fortunate and I hope you are.

    Matt

    nerve pain

    Thanks CiviMatt, for your reply. Yes, I do feel somewhat lucky compared to many people. I figured since I can not change the fact, I might as well accept what have happened and look only on the positive side and hope for the best. After all, it could be worse. Right now, the nerve pain on my face is the biggest problem for me. My doctor only concerned if there is a tumor growing on the nerve. When that is negative, he did not have anymore ideas other than time may eventually heal it. I hope that's the case.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
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    Hi Lucky....and welcome

    to our world :).  I have heard a few people on here talk about taking gabaplentin for nerve pain.  How much luck they had with it, I can't remember.  I have pins and needles in my ear, and the side of my face that started after my neck dissection.  It's irritating, but not painful like yours.  Maybe ask your Dr. for a prescription to try.  Chances are that that this is just one stage in your healing, and the pins and needles will abate some on their own....but why suffer until that happens?

    p

  • Lucky933
    Lucky933 Member Posts: 6
    edited December 2016 #5
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    phrannie51 said:

    Hi Lucky....and welcome

    to our world :).  I have heard a few people on here talk about taking gabaplentin for nerve pain.  How much luck they had with it, I can't remember.  I have pins and needles in my ear, and the side of my face that started after my neck dissection.  It's irritating, but not painful like yours.  Maybe ask your Dr. for a prescription to try.  Chances are that that this is just one stage in your healing, and the pins and needles will abate some on their own....but why suffer until that happens?

    p

    nerve pain

    Thanks phrannie51 for your posting. I will check with my ENT doctor next time I see him. If he prescribes some medication for it, I will post and let you all know how well it works for me.

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