Post radiation throat pain

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My husband is 5 weeks out of treatment consisting of 35 rads and 3 megadoses of cisplatin. ( for T3 scc in his glottis) His throat swallowing pain has not gone down at all. 2 wks post treatment actually pain went slightly up, and then slightly  down but it is still very high and is same as what it was at the end of treatment. He says even after oxy , he still has a pain of 7 intensity out of 10 :( I know everyone's different and he is probably healing slowly ( as per his radiation oncologist) but I wanted to ask you all out there. Is it normal not to see any pain relief in 5 weeks ? What can we do to alleviate this pain. He is on 100mg fentanyl patch and 10ml oxycodone every 4 hours.

We are relying on ensure enlive for his proteins and calories which he is able to take orally as no peg tube ( it was horrible swallowing during this whole time without peg tube)

Thanks all

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  • rsp
    rsp Member Posts: 103 Member
    edited February 2017 #2
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    Same boat here

    My husband is 8 weeks out and still has terrible pain.  He is on a fent. patch and takes 30 mls of oxy every 4 hours!  He says his tongue and throat are on fire and pain is 7 out of 10.  Went from weighing 254 to 180... no peg tube.  Can only get in 1 shake a day.  It takes him all day to drink it.  I fear he needs a peg tube.  Things are not getting better.  We are discouraged that progress is not being made... not sure where to go from here.

  • Lalitms
    Lalitms Member Posts: 9
    edited February 2017 #3
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    It is so frustrating. Week

    I can totally understand. It is so frustrating. Week after week and no progress. The pain is still as bad as it was ag end of treatment. It is very scary :(

  • Mgbfoster
    Mgbfoster Member Posts: 18
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    Post radiation throat pain

    I am 4 months post radiation. I had 30 treatments. I too am experiencing throat pain. Although my pain is not as severe as either of your husbands. I cannot swallow without difficulty and as the day wears on my pain level rises. It seems that my pain subsided after a month or two but has seem to reversed course. I have contacted all my doctors. They all say it is normal to have these types of pain post radiation. I have an appontment on Monday with my ENT. I do take Oxy but not on a daily basis and usually at night before bedtime. I hope you all find relief!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    edited February 2017 #5
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    Lalitms,

    Lalitms,

    I am sorry for your current normal, while many see small improvements by 5 weeks post, not all do.

      I would expect you to see some  turn-a-round soon.  Getting better for even the most fortunate of the H&N members is often glacial slow.

    Please try to keep drinking water (sips count) and keep your team informed until you are blue in the face.  While what is normal has a large range we do not want to miss anything important.

    Matt

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    edited February 2017 #6
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    I STRONGLY suggest you find a

    I STRONGLY suggest you find a Speech and Swallow therapist.  What you are describing is consistent with the tissue damaged in treatment healing, drying, and getting stiff and tight.  That can go on for months after last treatment.  The radiation alone is hot up to two months out, and still hitting your throat flesh every minute.  There are entire organizations of therapists that work on exactly that.  I'm not in pain, have no difficult swallowing, and yet my therapist is always reaching out and hitting a muscle in my neck or jaw that is tense and tight.   I'm now fully briefed on the problem, have a slew of exercises to prevent it, and every day I find I'm just  barely keeping up as my throat heals.

  • Lalitms
    Lalitms Member Posts: 9
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    Thank you all so much. Yes we

    Thank you all so much. Yes we update our doctor regularly. They were surprised too that there is no change at all. So doctor did a scope 2 weeks ago ( which was 3 wks post rad), even though they don't usually do this early) she said lots of blisters and swelling from radiation so give it time. We meet her again next week.

     

    I am also considering acupuncture, not sure how much it helps with pain though ...

  • silversword
    silversword Member Posts: 3
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    Mgbfoster said:

    Post radiation throat pain

    I am 4 months post radiation. I had 30 treatments. I too am experiencing throat pain. Although my pain is not as severe as either of your husbands. I cannot swallow without difficulty and as the day wears on my pain level rises. It seems that my pain subsided after a month or two but has seem to reversed course. I have contacted all my doctors. They all say it is normal to have these types of pain post radiation. I have an appontment on Monday with my ENT. I do take Oxy but not on a daily basis and usually at night before bedtime. I hope you all find relief!

    Post-rad throat pain

    Mgbfoster: I'm grateful for your post -- I gather I might have to be patient. My situation is close to yours tho I am only two months post-radiation for Stage 1 laryngeal cancer. The doctors/nurses said recovery would take a few weeks. It's been 9 weeks and the discomfort in my throat seems to be getting worse, not better. I take hydrocodone and/or viscous lidocaine for the pain, which seems to get worse late in the day, and sleep aids to help me sleep. Generally I've got it pretty good, I guess...I ate right through treatments, but now feel my appetite weakening. Maybe it will last another month or two...I just found this message board and it's good to learn of others' experiences.