Now the big problem is the pain.

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Hi Friends, 

Chris' mouth pain seems to be getting worse. He does the magic mouthwash, lidocane, oxycodone and has a Fentanyl(poor spelling I know) patch. Swishes with the baking soda water too. Does it get worse after the treatment is done? He finished all last Wednesday.

thanks

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  • cureitall66
    cureitall66 Member Posts: 913
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    Hang in there.....

    Don't get discouraged. For a few weeks or so after treatment it does seem to get worse. The rad tx is still "cooking" so to speak. It sounds like he's doing everything he should. About week 4-6 after tx it will lighten up. You just have to do what you can to make him comfortable. Take the meds regularly, rinse regularly, and be sure to swallow. I know that can be a challenge too because it hurts so darn bad, but he has to try to get some water down. And he must utilize his swallowing ability....if he doesn't use it, he may lose it.

    The best thing to do is try and get a routine down the best you can. At first, it may be trial and error. What works one day many not necessarily work the next. Unfortunately, he is going to have pain. Work with the doctors to manage it. Tell him it gets better....it really does. It's a hard price to pay to get rid of the beast, but it's worth his life!

    Hang in there...

    ~C 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
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    Post Treatment Blues

    It definitely gets worse after treatment is done. The last week of treatment and the first 2-3 weeks of recovery were brutal. Looking back at this point, I don't have a lot of recollection of those weeks. It seemed like one big nightmare that I couldn't wake up from. Pain, nausea, restlessness, lack of proper sleep etc....

    Hang in there! It really does get easier after a few weeks. 

    "T"

  • topcat1164
    topcat1164 Member Posts: 2
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    gets better slowly

    sounds like he is on track to do what needs to be done at this point....I finshed my last treatment of rads on 4/29/13 and it was tough the few weeks after with mouth pain and sores....just got rid of wicked sore throat, blisters on tongue...still feel weak but getting a little stronger each day...it is a slow process of recovery and will take time to fully recover from what I hear...I stopped all pain meds as I did not like the side effects including bad constipation...I stopped cold turkey but was told some need to be weened off them especially the fentanyl patch as I took 37 mg of the patches and wanted out of that mess..each week is a set of new challenges...best of luck to Chris!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    when do I feel better

    C&M,

    For many of us the pain and side effects seem to peak at about 2 weeks post and from there it is just a gradual climb up “Healing Mountain”. The length of the healing process and the degree you get back toward normalcy is not carved in stone; it is different for all of us. The trick is to direct it where you can and be satisfied with what you get.

    Best,

    Matt

  • Janetyoung
    Janetyoung Member Posts: 4
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    After treatment pain.

    It does get better, it takes a while.  Just make sure he doesn't  have thrush. That can cause a lot of extra pain.

  • hwt
    hwt Member Posts: 2,328 Member
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    After treatment pain.

    It does get better, it takes a while.  Just make sure he doesn't  have thrush. That can cause a lot of extra pain.

    Post tx

    Agree on need to rule out the thrush. I saw improvement in sores on my lips within a week of finishing tx but got hit with another case of thrush shortly after finishing tx. It would be a shame to continue with the pain and then find out it is treatable thrush.

  • robswife87
    robswife87 Member Posts: 209
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    After treatment pain.

    It does get better, it takes a while.  Just make sure he doesn't  have thrush. That can cause a lot of extra pain.

    Thrush is Rob's downfall

    This is his second bout and it is bad. They can not get rid of it and he can not eat. His tongue is in a lot of pain. Just get him to keep drinking and get a doc to look

    If Rob did not have the thrush he could eat even with the tongue burn.

    Good Luck

    Sandy

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
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    Thrush is Rob's downfall

    This is his second bout and it is bad. They can not get rid of it and he can not eat. His tongue is in a lot of pain. Just get him to keep drinking and get a doc to look

    If Rob did not have the thrush he could eat even with the tongue burn.

    Good Luck

    Sandy

    Pain / thrush / mucus

    Chris is on his 3rd Thrush medicine :-(  Yesterday they prescribed Caphosol for Mucositis which they say can also be causing pain. The pain just gets worse every day. They increased him to 2 pain patches too.

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
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    Pain / thrush / mucus

    Chris is on his 3rd Thrush medicine :-(  Yesterday they prescribed Caphosol for Mucositis which they say can also be causing pain. The pain just gets worse every day. They increased him to 2 pain patches too.

     

    I'm still IN treatment..

    but my mouth is a MESS.  I do the magic mouthwash and my doc prescribed liquid hydrocodone that I can swish and swallow if need be.  I was doing the baking soda rinse about every hour, but found it didn't really help me until I added salt to it.  I was thinking "Salt?? Are you kidding me?"  But, I promise it made a huge difference!  I take a quart of warm water and add 1 tablespoon salt and 1 tablespoon baking soda and mix it up.  I use that quart in a day's time.  Hope his pain is relieved very soon!  

  • hwt
    hwt Member Posts: 2,328 Member
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    I'm still IN treatment..

    but my mouth is a MESS.  I do the magic mouthwash and my doc prescribed liquid hydrocodone that I can swish and swallow if need be.  I was doing the baking soda rinse about every hour, but found it didn't really help me until I added salt to it.  I was thinking "Salt?? Are you kidding me?"  But, I promise it made a huge difference!  I take a quart of warm water and add 1 tablespoon salt and 1 tablespoon baking soda and mix it up.  I use that quart in a day's time.  Hope his pain is relieved very soon!  

    Thrush

    I had 3 or 4 bouts of thrush. It is painful, no doubt. I tried the recommended baking soda and salt and they probably heard my screams cross country. It seems to work for many but put me "in orbit".

  • Roar
    Roar Member Posts: 269 Member
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    Sun poisoning

    When people asked me what it felt like I would say its like sun poisoning in my mouth and throat. There is no pain killer for it, although the meds you describe seem to be the normal that are dispensed . When I asked why there wasn't anything they could give for the pain the answer I was given was that the two passage ways in the throat air and solids can not be numbed because you could choke If they numbed it. My experience was it got worse for about three weeks after treatment. I am not a pain killer fan, but for me the magic mouth wash was really the only thing that helped me eat. All the other crap oxy this and fentinyl that only helped pass the time. I am 5 months post treatment and still must watch what I eat as eating foods with high acid levels still gives me throat sores and pain. I did everything you mentioned above and all you can do is take one day at a time. It will get better- it's just frustrating. I clearly remember feeling very angry that I could not eat- life doesn't stop because you have cancer. The rest of your familly has to eat. And the smell of all those foods and not being able to eat is very frustrating. 

  • Chris and Marianne
    Chris and Marianne Member Posts: 25
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    Pain...

    Well I guess it's just a waiting game. Thanks for all the posts. My prayers are with all of you.

    Marianne