Mouth Pain

Paul G
Paul G Member Posts: 2
edited March 2014 in Multiple Myeloma #1
I am a 58 year old man who was diagnosed with multiple myeloma and CLL in August 2009. In the Fall of 2009, I did three rounds of Revlimid which did lower my MM cancer level significantly. In December 2009, I did a stem cell transplant which lowered my current cancer level to almost 0.

My problem began in January 2010 when I began having pain in my gums and teeth. This has worsened each week to the point where it has become very challenging. My oncologists do not believe it is related to the MM or CLL. I have been to 4 dentists (including a dental oncologist) who do not see anything wrong with my teeth. Conclusion is that I have had some nerve damage in my mouth from the chemotherapy. One doctor said this might last a year or longer.

Has anyone else heard about anything like this. Any ideas on how to relieve the pain which has become very difficult.

Thanks, Paul

Comments

  • MrBobC
    MrBobC Member Posts: 17
    #2
    Mouth pain
    Going through treatments I was told I could develop mouth sores, and they gave me something to rinse my mouth frequently. It worked, no mouth sores. After the treatments I don't take anything and i don't have mouth sores. i cannot imagine why you have this problem. Good luck with it andI hope you find out what it is to you can do something for it.

    Bob
  • MrBobC
    MrBobC Member Posts: 17
    #3
    Mouth pain
    Going through treatments I was told I could develop mouth sores, and they gave me something to rinse my mouth frequently. It worked, no mouth sores. After the treatments I don't take anything and i don't have mouth sores. i cannot imagine why you have this problem. Good luck with it andI hope you find out what it is to you can do something for it.

    Bob
  • MrBobC
    MrBobC Member Posts: 17
    #4
    Mouth pain
    Going through treatments I was told I could develop mouth sores, and they gave me something to rinse my mouth frequently. It worked, no mouth sores. After the treatments I don't take anything and i don't have mouth sores. i cannot imagine why you have this problem. Good luck with it andI hope you find out what it is to you can do something for it.

    Bob
  • mylungs
    mylungs Member Posts: 5
    #5
    mouth pain
    Paul,

    I hope you are doing better.

    my 62 year old brother was diagnosed with MM in 2003. he had radiation in nov for 5 weeks shortly after that he developed mouth pain: numb upper right quarter, severe pain in lower jaw. his docs too told him there is nothing they can do.

    did you ever get relief.

    Jerome
  • MrBobC
    MrBobC Member Posts: 17
    #6
    Magic Mouthwash
    Hi Paul. While going through treatments Nov08-Apr09 in Little Rock, AR there were many patients that had mouth sore issues. I never did develop mouth sores. I was told to rinse my mouth out after everything I ate or drank, and it seemed to have worked. Just in case they gave me a prescription of "Magic Mouthwash Liq". This is the generic name, I don't know the brand name. But many people who experienced mouth sores used this and it really helped.

    I hope this helps!

    Bob
  • Rory1987
    Rory1987 Member Posts: 120
    #7
    mylungs said:

    mouth pain
    Paul,

    I hope you are doing better.

    my 62 year old brother was diagnosed with MM in 2003. he had radiation in nov for 5 weeks shortly after that he developed mouth pain: numb upper right quarter, severe pain in lower jaw. his docs too told him there is nothing they can do.

    did you ever get relief.

    Jerome

    MOuth Sores
    Mouth sores usually occur when the head and neck region is irradiated. My mouth was filled with canker sores when I first had radiation to my maxilla back in 2007.
  • cactusbill
    cactusbill Member Posts: 3
    #8
    MrBobC said:

    Magic Mouthwash
    Hi Paul. While going through treatments Nov08-Apr09 in Little Rock, AR there were many patients that had mouth sore issues. I never did develop mouth sores. I was told to rinse my mouth out after everything I ate or drank, and it seemed to have worked. Just in case they gave me a prescription of "Magic Mouthwash Liq". This is the generic name, I don't know the brand name. But many people who experienced mouth sores used this and it really helped.

    I hope this helps!

    Bob

    Mouth and jaw pain
    I am 64 and newly diagnosed with MM after many years of MGUS. Mouth, jaw and ear pain are major issues for me. The ear pressure is often so bad that I can't wear my hearing aids. My VA doctor said this is a possible symptom along with the other neuropathy challenges. I have also read about TMJ type pain with MM. Anyone else out there with this issue?
    Bill

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