Hodgkin’s- severe mouth sores

Danica1107
Danica1107 Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello, I have Lymphoma stage 2A and started ABVD treatment on Monday. Since yesterday (wed), I have extremely painful mouth sores. It started With my gums and now it’s the roof of my mouth, under my tongue, the tip of my tongue and my lips. It’s been so painful I haven’t been able to eat or drink anything... breathing and talking hurts. I let my doctor know and they prescribed oral Ladacane... which hasn’t really helped. Does anyone have any suggestions? Thank you in advance 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Fast

    Danica,

    That is very fast for mouth sore reaction.  I hope the doctor can further assist you.

    I use Biotene for dry mouth, caused from my CPAP.  It might help, and I don't think it could hurt. My dental hygenist told me last year that it contains some substance that comforts gum tissue.

    Available at any corner drug store.  Good luch with it,

    max

  • Evarista
    Evarista Member Posts: 336 Member
    #3
    Magic Mouthwash?

    Suggest asking your doctor about a Magic Mouthwash prescription.  In addition to the lidocaine, it typically contains a coating agent (e.g., Maalox), and an anti-histamine ingredient (e.g. Benadryl).  Prescription has to be filled at a "compounding pharmacy" as it is made up fresh (most Walmarts, CVS, Walgreen's, etc can do this but not mail-order pharmacies). I had good success with this, although the sores lasted for a long time (non-Hodgkin's).  Once my acute issues resolved, I still had lingering oral inflammation (mucositis).  My Hem-Onc suggested trying 10 days of Acylovir, as my kind of mucositis can be associated with Herpes species (not shingles, not HSV-I or HSV-II; just general).  Do not try this without the consent of your doctor.

    In the meantime: stay away from salted nuts, chips, and spicy foods.  Even tomato-based foods can be irritating. I maintained on Haagen-Daz ice cream and the creamy kind of Ensure for quite a while.  Do try to stay hydrated and keep up with your nutrition, even if it is just Ensure.  I currently use Biotene as maintenance daily, but sounds as though you need something more aggressive.  Best of luck.

    Note added: since oral shingles could be a possibility, I would also ask specifically about that.

  • Rocquie
    Rocquie Member Posts: 869 Member
    #4
    Nystatin

    My doctor prescribed Nystatin, an antifungal. It was a liquid I swished around in my mouth 4 times daily. It worked like a dream for me. For the lips, I pierced a capsule of vitamin E. and rubbed the oil on my lips. It was very soothing and healing. Be sure to check with your doctor before using.

    I hope you get relief soon--that must be miserable.

    Hugs,

    Rocquie

     

     

     

  • Danica1107
    Danica1107 Member Posts: 2
    #5
    Thank you all for your

    Thank you all for your comments. We went to the Oncology Triage center yesterday. They said it was indeed Mucostitis, and was just beginning....  They put me on an IV drip with some morphine to ease the pain, and send me home with Dilaudid to use as necessary.  It has allowed me to have some nutritional shakes, but food (even eggs) are hard to swallow.  They did provide me with Valtrex (replacing the Acyviclor I was on) so hopefully that will help. They also prescribed the Magic Mouthwash- which seems to work well, but doesn't last very long.

    Thank you for your suggestions, if anything else is prescribed I will be sure to update this string.

    Best, Danica1107

  • EB303
    EB303 Member Posts: 22
    edited July 2018 #6
    Baking Soda

    My wife would gargle baking soda (mixed in warm water). She said it helped but certainly didn't "cure" it.  She also said it would improve after a few dayss, between each treatment. As she received AVBD every 2 weeks, he ody was essentially a 2 week roller coaster. It took about 24 hours post treatment for her to start to dive. She'd be down for a solid 4/5 days with the side effects (fatigue, more sores, bone pain from neulasta, etc). Then slowly start improving day by day. By day 12/13 she'd be feeling relatively ok - just in time for the next tresatment! It messes with you mentally too,  It takes about 2 cycles to get a feel for how exactly the chemo is effecting you, and by trial and error, what helps.  Someone mentioned to stay away from salty chips and tomatoes.  Ironically, my wife was mostly only in the mood for tositios and salsa. As long as she ate!  Perhaps it made her sores worse but you need energy to fight, so she picked her battles. 

    Be well!

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