Jim started folfox today- mouth sores already? Is this normal?

Nana2
Nana2 Member Posts: 255
edited March 2014 in Colorectal Cancer #1
Jim just started on Oxaliplatin,Leucovorin, Avastin and 5-FU today. He is already developing mouth sores. He has been swishing all last week with hot salt water and just used some LIDODIPHEN/ANTACID EQUAL SUS EQUAL PART
I don't know if that's what is what they call "magic mouthwash" but I'm concerned that he is having a problem already and getting ready to go to bed with another 8 hours of this stuff pumping into him. Is this a normal thing to have happen this soon after starting?
We talked to the Doctor on call and she just told him to use the mouthwash. Not feeling too confident.
Thanks
April :(

Comments

  • Crow71
    Crow71 Member Posts: 679 Member
    #2
    Hey April - I had mouth
    Hey April - I had mouth sores when I was on folfox. It started pretty soon into treatment. I don't know if what Jim is using is magic mouthwash. I looked at my bottle and it doesn't say what yours does. Call you onc tomorrow and make sure. It makes a big difference.

    I've had 2 treatments of folfiri and the mouth sores are starting. I've got one in the corner of my lips that makes it painful to smile. But I'm **** smiling anyway.

    Take care -- Roger
  • Nana b
    Nana b Member Posts: 3,030 Member
    #3
    Crow71 said:

    Hey April - I had mouth
    Hey April - I had mouth sores when I was on folfox. It started pretty soon into treatment. I don't know if what Jim is using is magic mouthwash. I looked at my bottle and it doesn't say what yours does. Call you onc tomorrow and make sure. It makes a big difference.

    I've had 2 treatments of folfiri and the mouth sores are starting. I've got one in the corner of my lips that makes it painful to smile. But I'm **** smiling anyway.

    Take care -- Roger

    I also go them on folfox
    If I remember the magic mouth wash is a pinkish cream color. Mine had benedryl, Maalox and other ingredients but here is a link, as there are many varieties. From my experience on this board as soon as someone used it, it goes away. I only used it a for about a week. But don't throw it away, it lasts past the expiration date and works great for Kankor sores.

    http://www.drotterholt.com/magicmouthwash.html
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #4
    compounded
    Hi April...Magic mouthwash has to be compounded by the pharmacist. Each doctor has to write the ingredients that they want in the mouthwash. Mine had lidocaine, Maalox, anti-fungal meds and I *think* antibiotics. I know how painful the mouth sores can be.I had a real serious bout with them on treatment #2. I even had then in my throat.Mine directed that I "swish AND swallow". Tell Jim to leave it in his mouth as long as possible...swishing and if it says to swallow on the label then swallow it.

    I feel for him but I hope this doesn't discourage him too much.They should start to heal quickly as soon as the treatment is over.Try to stay away from spicy foods while the sores are present. I found out the hard way what spicy chicken can do to an inflamed mouth/ throat.

    Best wishes to you both.

    -Pat
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    Jaylo969 said:

    compounded
    Hi April...Magic mouthwash has to be compounded by the pharmacist. Each doctor has to write the ingredients that they want in the mouthwash. Mine had lidocaine, Maalox, anti-fungal meds and I *think* antibiotics. I know how painful the mouth sores can be.I had a real serious bout with them on treatment #2. I even had then in my throat.Mine directed that I "swish AND swallow". Tell Jim to leave it in his mouth as long as possible...swishing and if it says to swallow on the label then swallow it.

    I feel for him but I hope this doesn't discourage him too much.They should start to heal quickly as soon as the treatment is over.Try to stay away from spicy foods while the sores are present. I found out the hard way what spicy chicken can do to an inflamed mouth/ throat.

    Best wishes to you both.

    -Pat

    completely normal
    The best l found was, warm water with bicarbonate (sugar spoon).
    Best
  • Patteee
    Patteee Member Posts: 945
    #6
    try alternating rinses- the
    try alternating rinses- the magic mouthwash and the warm salt water (add baking soda as well)
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #7
    Patteee said:

    try alternating rinses- the
    try alternating rinses- the magic mouthwash and the warm salt water (add baking soda as well)

    Mouthwash
    I was on Folfiri and mouth sores started. I tried several things including "magic mouthwash" but I had the best luck with good old fashion "LISTERINE" The original flavor... if thats a flavor..... it burned but I made myself keep it in my mouth as long as possible and after I spit it out I rinsed 1 time with water. It actually had a numbing effect on those sores and made them feel much better. After the sores went away I would start rinsing with the Listerine the day before treatment started and thru the treatment and for a few days after treatment. Never had sores again. You take care.

    Jennie
  • dschreffler
    dschreffler Member Posts: 58 Member
    #8
    Yep, I had mouth sores right
    Yep, I had mouth sores right from the folfox start.. I'm entering round 4 now. It is controllable... Biotene mouthwash and tooth paste, nothing with alcohol in it, no soda, no chips/pretzels/doritos or spicy foods.Watch the acidy foods like juices, but can work out if ou drink some water to rinse mouth after having. Brushed teeth after every meal, flossed and rinsed each time. I keep a "sippy cup" of water by my bed and take a drink a few times during the night to keep mouth wet. That kept it in check and by day 9 it lessened. Hydration seems to be key.
    I also had the corners of my lips get cracked/sore - lip balm is my friend.
  • Nana2
    Nana2 Member Posts: 255
    #9
    Thank you all for your
    Thank you all for your responses. He is doing better today. His mouth is less tender already and he is mostly just fatigued. He's also very hoarse. I was awake until 2am tossing, turning, worrying. I think just afraid he was going to have some kind of awful reaction to the stuff. (He slept quite soundly through all my insanity!) It really is different dealing with the chemo than it is dealing with surgery. The sound of that thing pumping poison into him makes me a little crazy. I know it's helping kill that beast but it sure plays with your head doesn't it? Some of you have gone through this for so long. I told someone today that just found out her dad has cancer that it gets easier as time goes on. Each "new" thing is hard, but then it all becomes part of the routine. The new normal right?
    Thinking of all of you too as we go through this. Thank you for your input, just knowing that you were out there listening (reading) kept me a little more sane last night.
    God Bless,
    April
  • pluckey
    pluckey Member Posts: 484 Member
    #10
    Nana2 said:

    Thank you all for your
    Thank you all for your responses. He is doing better today. His mouth is less tender already and he is mostly just fatigued. He's also very hoarse. I was awake until 2am tossing, turning, worrying. I think just afraid he was going to have some kind of awful reaction to the stuff. (He slept quite soundly through all my insanity!) It really is different dealing with the chemo than it is dealing with surgery. The sound of that thing pumping poison into him makes me a little crazy. I know it's helping kill that beast but it sure plays with your head doesn't it? Some of you have gone through this for so long. I told someone today that just found out her dad has cancer that it gets easier as time goes on. Each "new" thing is hard, but then it all becomes part of the routine. The new normal right?
    Thinking of all of you too as we go through this. Thank you for your input, just knowing that you were out there listening (reading) kept me a little more sane last night.
    God Bless,
    April

    Aril- I'm so glad Jim had a
    April- I'm so glad Jim had a better day. You got great tips and one of those combos will help Jim's sore mouth. I definitley was on a soft diet for many months due to mouth sores. Carnation Instant Breakfast with whole milk was my best friend!

    Wishing you and Jim some peace in this new routine of chemo and dealing with side effects.

    ((HUGSS))

    Peggy
  • dschreffler
    dschreffler Member Posts: 58 Member
    #11
    Nana2 said:

    Thank you all for your
    Thank you all for your responses. He is doing better today. His mouth is less tender already and he is mostly just fatigued. He's also very hoarse. I was awake until 2am tossing, turning, worrying. I think just afraid he was going to have some kind of awful reaction to the stuff. (He slept quite soundly through all my insanity!) It really is different dealing with the chemo than it is dealing with surgery. The sound of that thing pumping poison into him makes me a little crazy. I know it's helping kill that beast but it sure plays with your head doesn't it? Some of you have gone through this for so long. I told someone today that just found out her dad has cancer that it gets easier as time goes on. Each "new" thing is hard, but then it all becomes part of the routine. The new normal right?
    Thinking of all of you too as we go through this. Thank you for your input, just knowing that you were out there listening (reading) kept me a little more sane last night.
    God Bless,
    April

    Hi April,
    As a patient,
    Hi April,

    As a patient, watching my care giver wife be stressed, not sleeping and be worried in the beginning of my treatment did more to make me feel bad then the chemo, so please relax. Hopefully you and your husband will find that a lot of this is small challanges. Don't ignore stuff, but don't make em bigger then they are.

    I crack my wife up every time I hear the pump infuse, no matter what time of day, and tell it "thank you".

    You all be fine,

    Dan
  • jams67
    jams67 Member Posts: 925 Member
    #12
    mouth sores
    This was a life saver for me when I went through chemo. Someone posted this on our site, and I copied it. Not sure who it was but it has helped several people. Hope this is helpful to you.
    Jo Ann

    I am a caregiver and dental hygienist so the moment my husband was diagnosed (Stage IV - 10/04) I started him on Prevident 5000 Booster (a prescription Colgate fluoride toothpaste) and all the Biotene products (mouthwash, gum, saliva substitute "Oral Balance", and toothpaste). These products can be used by anyone at anytime because they are great preventitive treatments to keep your mouth healthy before any problem can even start.
    When you are going through all the aspects of chemo and/or radiation - the last thing you need to deal with is a gum or tooth problem. These products help to replace the naturally occuring antibacterial enzymes in your saliva that you have lost and then you can fight off oral irritations, canker sores, ulcers and gum infections. Even if you are not undergoing any treatment, many of the medications you might be taking can also cause dry mouth(xerostomia) - so these products can also help prevent the effects of dry mouth (poor healing,sensitivity gums and teeth, dryness, itching, burning.
    Dry mouth and radiation can also cause your teeth to decay very easily. The Prevident 5000 Booster toothpaste helps to remineralize your teeth and make them more resistant to decay.
    My husband has undergone 7 1/2 months of Avastin, 5 FU, leucovorin, and irinotecan and that was followed 4 months later with 15 months and counting of weekly erbitux and irinotecan. He has had side effects to deal with, but thankfully he has never had any mouth problems. I trully believe in both products....I recommend all of the biotene products and Prevident 5000 for all of my patients with a dry mouth and anyone undergoing any cancer treatment.
  • P_I_T_A
    P_I_T_A Member Posts: 133
    #13
    Yeah I got them as well
    I have herp1 and like most people you would never even know you had it, staying dormant in your system. Well, the chemo recks havock on you're immune system. I had broke out with 2 mouth sores after treatment 2 or 3. Come to find out my white cell count had bottomed out. I got a white cell booster shot and was fine fine after that. No more outbreaks and no more of the night-time "shake & bake" episodes.

    -DJ

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