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7 Replies Latest reply: Jul 25, 2010 10:29 PM by jackrab RSS

Mouth Pain

paulg Registered Users
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I was diagnosed with mutiple myeloma in August 2009.  In the Fall 2009 I received three rounds of Revlimid.  In December 2009, I had a stem cell transplant.  Beginning in January 2010, I have had pain in mouth which seems to get worse each week.  The pain is in my gums and teeth.  I have been looked at by 4 dentists, including a dental oncologist.  They believe the mouth pain is not related to my teeth, but to my cancer and its treatment.  The oncologist who is treating my mouth pain believes it may be related to the chemotherapy I received with the stem cell transplant.  He said there may be some damage with the nerve endings in my mouth.

 

Is there anyone else who has had this type of problem.  What have you done about it.

 

Thanks, Paul

  • Re: Mouth Pain
    ArizonaGirl Registered Users
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    Hi Paul,

     

    You are the only other person I have ever heard of with this problem!  I had an auto transplant over 2 years ago and I had tremendous tooth/gum pain following transplant....to the point I couldn't brush my teeth awhile or drink anything cold.  Also I couldn't eat any sugar as that was incredibly painful as well.  My transplant doctor told me I was her only patient to ever have that symptom.  

     

    I understand your concern, because this was not a minor pain, but excruciating.  Really made it difficult to eat.

     

    I was never able to find anything to cure this right away...I had to wait it out and just do what I could to avoid the things that exacerbated the pain. 

     

    Good news...it finally went away in about 6 months!  I have no problems anymore, but there was a while there that I thought it was permanent.  I DO believe it's from the chemo (I had melphalan).   Did you have other bad side effects from the chemo?  I ask because I had a really difficult time with melphalan...lots of GI issues, mucositis and bleeding, so was not too surprised my teeth and gums would have issues as well. 

     

    I believe that eventually your pain will get better.  I just think, like all the other symptoms it can take a while to resolve.

     

    Best of luck to you!  Hope you are getting your strength back and doin well.  Please keep us posted!

     

    Kris

    • Re: Mouth Pain
      paulg Registered Users
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      Kris

       

      I cannot believe there is someone else out there who had this problem.  And I am so happy to hear that it eventually went away.  I had my stem cell in December and the pain started slightly in January, increasing a little each week.  The pain is at a very high level now.  What is so strange is that the pain is centered around three different teeth in my mouth -- all of which I had root canals years ago.  I went to four dentists including a dental oncologist at MD Anderson in Houston (where I am getting my cancer treatment).  I have multiple myeloma.  My other doctors have never seen anything like this.

       

      Yes, I had melphalan during my stem cell transplant.  I did not have many issues during my transplant -- nausea, fatigue, but nothing out of the ordinary compared with others.

       

      My doctors now have me on Lyrica (because the pain is likely nerve related) and Hydrocodone for the pain.  If you have any ideas on what I can do to get by until this goes away, I would greatly appreciate it.

       

      Thanks, Paul

    • Re: Mouth Pain
      paulg Registered Users
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      Kris

       

      For your mouth pain, did you find anything that provided relief.  Did any of the medications work.  I am currently on Lyrica and Hydrocodone which provide limited relief.  I am thinking about trying acupuncture.

       

      You are the only person who I've heard who has had this same side effect.  Anything you can share with me would be greatly appreciated.

       

      Many thanks, Paul

      • Re: Mouth Pain
        ArizonaGirl Registered Users
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        Paul,

         

        Sorry I did not get back to you sooner.  I was out of town this weekend.

         

        I wish I had a great remedy that worked for me but I don't.  I was able to avoid most of the pain by not brushing (gross...but I used the those toothettes for a long time), not eating sugar and not putting cold water in my mouth as those were my triggers.  I am sure it was a nerve sensitivity thing (although again no one had ever heard of it).

         

        Is your pain all the time or do certain things trigger it?  Mine was was definitely triggered by hot, cold, sugar, eating in general or brushing my teeth.  Unfortunately, this prevented me from eating for quite some time.  I was told to try the Nystatin rinse to be able to brush my teeth, but it made the pain so much worse because of the sugar content.  When I got to that point only an Oxy would alleviate the pain.

         

        So interesting they put you on Lyrica!  Im glad that is helping somewhat, but I know it's not completely doing the trick.

         

        I'm so sorry I have no great recommendations.  I just tried to stay away from the things triggering the pain but if yours was 24/7 that's really no help.

         

        All I can really offer is that it DID go away after months.  I was starting to worry that it was going to be a permanent problem, but it did subside in time.

         

        I sure hope that you are able to find something that helps and that the pain subsides soon!  Tooth pain is awful!

         

        Kris

        • Re: Mouth Pain
          paulg Registered Users
          Currently Being Moderated

          Kris

           

          Good to hear from you.  I can't tell you how good it makes me feel to know that there is someone else who has had this problem.

           

          My pain is pretty constant, although it does have its ups and downs.  I have three spots in my mouth where most of the pain is concentrated.  All three of these areas are where I had root canals in past years.  The doctors are not sure why this had occurred.  All three root canals are fine, but the teeth and the areas around them are painful.  So this is where the doctors think I have damaged nerves from the chemo in December.

           

          I am lucky because I still have about a third of my mouth (most of left side) which is not affected.  So I can eat most foods as long as they are relatively soft and I remember to eat slowly.  If I try to eat on my right side, the pain is excruciating.

           

          Thanks again for staying in touch.  Again, just connecting with someone makes all the difference.

           

          All the best, Paul

  • Re: Mouth Pain
    ArizonaGirl Registered Users
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    How is it going, Paul?  Is the mouth pain any better?

     

    Kris

  • Re: Mouth Pain
    jackrab Registered Users
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    Are you on Zometa?  It can cause problems in the jaw bones which could be causing your pain.  Sorry you're going through this. 

     

    Jackie

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