Mouth sores from 5fu

I'm looking for others who have had 5fu treatments

I've had one treatment with the infusion removed last Saturday.  The mouth sore are really severe.  Not so much pain, but not able to eat, brush, and even open mouth very wide.  What have others done to releave this side effect?

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    Sores

    I had them on my lips bad with Cisplatin. I recall thinking, how could they put a man on the moon buy can't avoid this. Sad to say, I don't think there is a solution. Some say baking soda and salt gargle helps but when I tried it put me In orbit. I was given Caphosal, can't say if it kept them from getting worse or not but did not make them go away. Wish I had more to offer.

  • Packer fan
    Packer fan Member Posts: 3
    hwt said:

    Sores

    I had them on my lips bad with Cisplatin. I recall thinking, how could they put a man on the moon buy can't avoid this. Sad to say, I don't think there is a solution. Some say baking soda and salt gargle helps but when I tried it put me In orbit. I was given Caphosal, can't say if it kept them from getting worse or not but did not make them go away. Wish I had more to offer.

    When can I expect sore to subside?

    How long before you stated to notice the sores getting better?  I have had them for one week already and pray every day they will be better, but nothing so far

  • phrannie51
    phrannie51 Member Posts: 4,716
    .....and now you know....

    ...what the FU stands for in 5fu....it's horrible stuff!  I had sores on my cheeks and tongue...but the worst was my lips....they were like hamburger.  The only thing I could get into my mouth was L-Glutamine powder mixed with water.....delivered with a styrofoam cup, as glass, plastic, paper was simply too hard for my lips.  I also kept Auquifor on a piece of plastic wrap in order ot smear it on my lips, as my figertips were too rough.

    I used Nystatin ointment on the cracks at the sides of my mouth, that helped getting my mouth open.  Everything (food and water) else I had to put down my tube.  I hope you have one.  I've heard there are new prescription meds on the market that are better than just a couple of years ago.  It's hell, I know.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    5fu

    PF,

    I did not have 5fu, but wanted to remind you of the importance of drinking water and swallowing.  It can surprise you how difficult normal things become.

    I used magic mouth wash for throat, tongue and mouth discomfort

    Best always,

    Matt

  • donfoo
    donfoo Member Posts: 1,771 Member
    5fu is fu for sure

    I had taxotere, cisplatin, and 5FU. I'm pretty sure it is the 5fu that is the brutal beast as most that have it get similar reactions. Hang tough. Try to typical sutff. 1/2 and 1/2 baking soda and salt mixed in with warm water and swish around. Magic mouthwash with lidocaine to help with the pain. Not many are able to lessen the side effect, mostly try to ease the pain and sores. Hang in there.

  • phrannie51
    phrannie51 Member Posts: 4,716
    CivilMatt said:

    5fu

    PF,

    I did not have 5fu, but wanted to remind you of the importance of drinking water and swallowing.  It can surprise you how difficult normal things become.

    I used magic mouth wash for throat, tongue and mouth discomfort

    Best always,

    Matt

    Matt....I had to "drink"

    the L-Glutamine powder in water.....something about that mixture kept plain water from stinging so bad.  I poured a ton of plain water down my tube, but I was SO paranoid about losing my swallower I had to find something that I could stand to put into my mouth to swallow.  I tried the MM, but it stung so bad, I gave up on it....so did the plain Lidocaine.   I was thinking of his swallower when I suggested the LG.  Smile 

  • hwt
    hwt Member Posts: 2,328 Member
    donfoo said:

    5fu is fu for sure

    I had taxotere, cisplatin, and 5FU. I'm pretty sure it is the 5fu that is the brutal beast as most that have it get similar reactions. Hang tough. Try to typical sutff. 1/2 and 1/2 baking soda and salt mixed in with warm water and swish around. Magic mouthwash with lidocaine to help with the pain. Not many are able to lessen the side effect, mostly try to ease the pain and sores. Hang in there.

    Timing

    My lip sores lasted until tx finished. Immediately after tx stopped they started to improve and within a week or two were gone. Again, I had Ciaplatin not 5FU. We are each different, hope yours heal quickly.

    Candi

  • ptom
    ptom Member Posts: 41 Member
    Magic Mouthwash

    It's the only way to go and is a mixture of Benadryl, Lidocaine and Maalox.  Saved me from many painful days and nights.

    ptom