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10 Replies Latest reply: Feb 26, 2012 2:04 AM by Peter'sMum RSS

Looking for input - who had problems with mouth sores and other oral issues?

mommylion Registered Users
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A friend of mine from college is a dentist, and he has chosen to focus part of his practice on the unique needs of cancer patients. He is looking to hear from parents of kids who have cancer or who have gone through treatment to find out what kinds of problems the kids may have had with mouth sores, severe dry mouth, infections, etc. I do recall that when our daughter was first diagnosed with ALL at the age of 2, we were instructed to swab her mouth a few times a day with a solution they gave us to keep mouth sores away. She never had a problem with them, but I know a lot of other kids did.

 

Since beginning this type of work, he hadn't dealt with any pediatric patients, and was hoping to find out what difficulties our kids have faced, so he can work with some new patients and help them heal. Is there anyone out there who can share their experiences? I think it's wonderful that he is taking his expertise in this direction, and would love to do what I can do help him out.

 

Thanks! 

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    LongRoad Registered Users
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    My son (9; DX 3/11; Pre-B ALL AALL0932  AR-ARM C) had a few mouth sores in induction and had a massive outbreak developing at the start of IM1 with the first dose of escalating methotrexate. Before any sores ruptured we started him on 2 grams L-Glutamine powder twice a day mixed with 1/3 cup of juice. The sores cleared within a few days without rupturing and have not returned. He is currently three months into LTM  and has taking the glutamine since. Our ONC has told us that she does not believe we need to continue the glutamine in LTM as the dosage of MTX is much lower than it was earlier and mouth sores are less likely, but she saw no harm in continuing for the duration of LTM. My son decided wanted to stay on the glutamine as a precaution. As kids has so little control in their treatment, we are continuing the glutamine.

     

    The literature is inconclusive on the efficacy of glutamine. When we were faced with an outbreak, we were offer nothing more than peridex, magic mouth wash and the prospect of going in-patient if my son could not drink fluids. Base on the what I read on the boards and the limited research available, I initially proposed glutamine at a much higher dose as others have suggested. Ultimately our ONC agreed to the lower dose that was used in a couple of studies. All I can say is that we have not had mouth sores since being on glutamine. What I don't know is if it was the glutamine or just luck.

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    abslater Registered Users
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    My daughter had some mouth sores during HD Methotrexate. We used Biotene mouth wash & toothpaste. Rinsed with baking soda  ..and used "Miracle Mouthwash" - forget what's in it - it was a prescription - Lidocane and something that you rinse with - but don't swallow .....her sores only lasted a few days. b

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    mom2Graham63 Registered Users
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    My son has had a terrible time with mouth sores. He tried everything- Magic mouth wash, consisting of Lidocaine, Maalox and Benadryl (there are a variety of mixtures). This would work very temporarily and he complained it made food taste bad so that turned him off of it. The clinic suggested he use preservative-free toothpaste, so he tried that with no effect. He has used glutamine capsules since about July '09. We increased his dose after the sores returned with a vengeance last spring and, I think, he hasn't had quite as many problems. (He is 18 now and will be off treatment this coming June. He doesn't tell me as much any more--not that he was ever a great communicator)  They were talking about reducing or eliminating his methotrexate last spring. He finally BEGGED them to just give him some pain control and he could deal with it for the rest of treatment. They finally agreed to prescribe him oral morphine. He takes it only when the sores are bad. He hasn't had too many problems with the chemo, but the mouth sores have certainly been a plague!

     

    Lorna

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    wparoyan Registered Users
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    My son was diagnosed with high risk ALL in Oct 2010.  He had just turned 5 at diagnosis.  My son's dental issues were a hot button for me initially.  I haven't thought about it for a while.

     

    He had dental issues prior to his diagnosis.  He was cavity prone child compared to my other 2 kids who both had almost no cavities.  I had been taking him to see a pediatric dentist for a few years.  He had 2 old cavities abscess in July 2010 and another in mid-Sept 2010.  Those teeth were pulled.  I'm guessing the September 2010 tooth infection was related to the Leukemia, and maybe even the July 2010 ones, but none of the Heam-Oncs would acknowledge that connection when he was diagnosed with ALL a few weeks later.  He had a few more teeth pulled a few weeks after his diagnosis too because they were loose.  The pediatric dentist pulled them because he didn't want them falling out when his platelet count was low and then we'd have a bleeding problem we'd have difficulty stopping.  They did a 2for1 at the hospital.  They did an LP and the dental work in the operating room, all at one time while he was asleep.

     

    Wow, that was a lot of teeth to get pulled.  Poor guy.  He was reasonably toothless for a few months and I worried about how he'd chew.  But the pediatric dentist smirked & said to me "Don't worry...he's a boy..he'll eat fine".  The funny thing was that he was right.  He never complained about his missing teeth and would eat all kinds of hard food.  The front teeth came in early, so he looks normal now.

     

    He hasn't had any mouth sores during treatment nor any cavities.  Nevertheless, we rinsed his mouth with salt water during some of the initial treatment.  I don't really remember what phase that was.  They gave us something else to rinse it with, but I used salt water because my family is used to that.  I'm a bit of a salt water disciple when it comes to sore throats, so he didn't really complain too much about the salt water.

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    mommylion Registered Users
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    Thank you all for taking the time to pass on this information. I am so sorry your kids had to endure mouth sores on top of everything else. As if cancer weren't enough. Good luck to all of you and your kids!

    • Re: Looking for input - who had problems with mouth sores and other oral issues?
      norrim04 Registered Users
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      My son Joey has had more or less constant lip and mouth sores since DX in 2008 (relapse 2010). He takes Acyclovir 2x daily unless he's been sore free for a couple weeks and/or we're trying to boost counts b/c the Acyclovir (Zovirax) lowers counts. Magic Mouth wash makes him gag so he just uses a .9% saline rinse. I know we could make it at home, but that makes it too much of a Mom thing so we buy the saline at our local drugstore. It's really cheap.

       

      Joey's larger concern is that we've had to put his braces on hold. He was supposed to start them the month after he was diagnosed but they're on hold until he's well off treatment. Joey needs some teeth pulled, his canine teeth overlap other adult teeth, but we can't do anything about that right now. I've promised him that if he has to go off to college with braces, we'll figure out a way to spring for Invisilign (sp?)

       

      Margaret

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    tcell_all Registered Users
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    More than anything, I think infection control is key.  Our dentist asks for a CBC before any work and our son takes amoxilin too before dental work. 

     

    During a period of low platelets, we noticed once that our son's gum "drooped" -- the gumlooked like a "slab" of meat hanging down the upper front tooth.  Somehow, the gum recovered (pulled back) as the platelets recovered.

     

    Not sure if anyone experienced something similar, but perhaps dig deeper for a cause of how gums are affected and if that is truly related to low platelets ?

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    leahamarie Registered Users
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    My son was 3 when dx  with aml in 2002.  The dr's wanted us to swab his mouth with a mouthwash.  They told us it would not stop mouth sores from occurring but was intended to prevent infection of any sore that developed. But it ended up being an unbelievable ordeal and we quietly stopped it, deciding that it was not worth the trauma for him.  He had just 2 mouthsores, 1 on his lip during the first course of chemo and 1 on his tongue during the second course of chemo and neither became infected.  . 

     

    He has some long term dental issues. Xrays show that 1 tooth did not develop and 3 teeth  are very small.  These are the teeth that would have been developing in the jaw around the age of 3.

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    Kim Registered Users
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    We were told by our clinic (Mercy in St. Louis), that my son had the worse mouth/lip sores they have ever seen.  He ended up hospitalized for 48 hours with fungal, bacterial, and viral infections all in his mouth in May 2011.  That was our lowest pint of treatment, right at the end of consolidation and cranial radiation.  He still now gets flare ups 3 weeks after the vinicristine and MTX.  Sometimes the sores are up his nose and on his tongue.  He suffers cold sores (4-5 sores) every 3 weeks also. The mouth sores we treat with homemade Magic Mouthwash (Benadryl, Maalox, and a prescription Nystatin rinse) and lip sores with Aquaphor and a new treatment we found called LypSyl.  Jack did have 2 canines removed this week ,and we pretreat dental visists with 1500 mg. of Amoxicillian.  His dentist told us to try "Nature's Second Skin".  His father suffers from CML and uses that.  Haven't found it anywhere yet, will ask the clinic on Monday.  I know how my son feels too, I have suffered 5 rounds of a viral infection with lesions in my mouth since his diagnosis (stress induced)!  My husband just flared up too this past week due to a high fever, so we all "enjoy" a little Nystatin rinse once in a while around here!

  • Re: Looking for input - who had problems with mouth sores and other oral issues?
    Peter'sMum Registered Users
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    We find the Methotrexate to be the worst cause of the mouth ulcers. With the HD MTX, Pete had mucositis from his mouth all the way though down his digestive system. His mouth was a nightmare to look in. We were meant to use the mouth wash, and I did try, but he was in so much agony that I couldn't really do more than dab his lips. There was no way you could get a swab or anything inside, it was just too damaged. The only thing that helped was his counts eventually rising. All though this time he had a huge dribbling problem. It was continually pouring out.

    He has oral mtx every wednesday and has actually been doing ok on it. But this week he got mouth ulcers 3 days after and they are running right along the inside of each lip. So we have him on glutamine (which we didn't know about earlier on when he had the musositis). We find the glutamine great as a preventative before he  has the hi-dose oral MTX (which he has every 8 weeks), but it is really best before the ulcers have a chance to appear. I just didn't really expect the ulcers this week, so we are a bit stuffed really.
    Oh, and re the infections. When Pete had the mucositis, he started to get lots of positive blood cultures, so I presume the bacteria was able to get in through all his broken down oral and digestive areas. So that's a major problem with mucositis.

    Bridget

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