9 replies to this topic

[ritan/]

i'm on 400 mg of gleevec and i have almost constant sores on my tongue. they sort of wax and wain but are a constant. i've tried the "magic mouthwash" with little success. it burns and hurts enough that it is hard to make myself use it at all, and when i do it just seems to offer a short while of numbness, but does little or nothing to help heal it. i brush often, altho that hurts as well. i've been using Biotene mouthwash. this is the most successful thing i've tried so far. but it just seems to "take the edge off" more than anything else.  anyone have any suggestions?

[TeddyB]

I had a lot of those when starting treatment, i changed toothpaste and it helped a lot.

The one i use now is called Zendium, worth a try?

Good luck.

Teddy

[ritan/]

at this point i'll try almost anything. i've been doing this up-and-down thing for a year solid. i'm sure they're not as bad as ones in people on full-blown chemo, but week after week they are just too much.

[Tedsey]

Dear Castlefibers,

Sorry to hear you are in so much pain.  I truly feel for you.  I suffer the same.  I developed chronic ulcers, (apathous ulcers), just after taking Sprycel (100mg).  2.5 years later, I think my body has finally adjusted a little better to the drug, (if it is the drug).  Now I get a much milder version of the gaping holes I would get on my cheeks, tongue and under my tongue in the soft part where it attaches. 

As for relief, I am not sure if I can name brands here without being edited, but here it goes.  If I get edited, just send me a personal message.  All of these are over-the-counter and could be purchased at most drugstores.  I use all of them depending on the sore, how painful it is, and what I am in the mood to endure, (ex. taste and texture). 

1) Best: Try Kanka.  Hold the applicator on the sore until you cannot stand it.  It numbs pretty well, but the relief is only about 20-30 minutes.  Unlike the "magic mouthwash", you can numb just the sore and not your whole mouth.  It puts a thin coating over the sore, but it is not very stable (it comes off quickly).  Nevertheless, the numbing effect of the medicine has the best staying power I have found (even after the coating wears off).  It works well so you can eat something.

2) Next, you can try Zilactin-b.  It comes in second place for me regarding numbing effect.  However, the coating is stronger.  It holds up better.  So, if food bumps directly against your sore, it has a better shield than Kanka.  I use this too for less painful sores, but it is expensive at about $10.00 US for a very small tube.

3) In my case, I had sores down my throat.  I am afraid there is not much to relieve this pain but unconsciousness.  However, Chloraseptic mouth spray can reach into your throat and it numbs for up to 5 minutes (so basically, it is not worth it, but you can down your TKI with less pain).  I never tried using it like the "magic mouthwash", but I suppose it could help.  Nevertheless, it would numb your whole mouth.

4) Last, there is Canker Cover.  It is a very good product.  You can break the tablets to fit the size of your sore.  It is a tablet that contains cellulose and dissolves to form a cover over the sore.  The tablet is not a pain reliever, but it provides a strong cover.  Sadly, it does not work well on the tongue.  It is the most expensive at six tablets for about $10.00 US (but a total bargain compared to how much Sprycel costs per pill).

All the claims that they last 8 hours or whatever is a myth and must be for someone who doesn't have any sores in their mouth.  The longest relief I have ever gotten is 30 minutes.  However, the Canker Cover will last the longest (if you can tolerate it falling apart in little pieces over time or if it doesn't fall off all at once---but it is a good product).  All of the meds with a "cover" will fall apart in your mouth either in little pieces or one lump sum.  Although I don't like to, they are supposed to be safe to ingest.

Now, I have really suffered from mouth sores.  I was sent to a special dentist and an oral pathologist.  As kind as they were, they could not offer me any relief or medication better than what I mentioned above, (one did say he could cauterize the sores and have them form a scab, but you cannot do that on the tongue, which was where I normally get them).  As for helping the sores heal, I was told there was nothing they could do and the sores would have to just run their course.  Bad and expensive news since I couldn't talk, sleep, eat, swallow, or read to my toddlers, (that was the most depressing).  It is not worth it to go to a doctor for this unless you think it may be mouth cancer or something else (or if you think the "magic mouthwash" is the "best thing ever"--it gave me the least amount of relief).  If you go every six months for a cleaning, the dentist will normally check for mouth cancer.  By the way, no worries.  I have never heard that apathous ulcers are related in any way to cancers of the mouth.  They are also not herpes.

Very last, I was taking up to 1500mg L-Lysine per day (that was the highest dose recommended--got info. on Internet).  I read that of all things suggested, L-Lysine had the best success (better than zinc, or DGL), but it was mainly in herpes sufferers.  L-Lysine was minimally effective for me, (I just couldn't tell--took it for over a year and still take it sometimes when I get a sore).  There was a study out of Britain that supported that in some people, using DGL helped.  I think it was mostly a soothing effect.  However, I found it just tasted good, (it is from black licorice), and was just something else in my mouth to aggravate my sores, (since you had to chew the pills).  The zinc is a bust, and it can make you nauseous.  Maalox, Mylanta, and the like is much more effective for treating deep external skin ulcers.  In the case of apathous ulcers, I have found it does not promote healing or soothe the sore, (likely saliva just breaks it up too fast for it to do any good).  However, it does a good job of leaving an icky, chalky, synthetic, fruity taste in our mouth though, if that is what you crave.

As I have been dealing with the sores for 2.5 years, this is the best that I have been able to come up with.  My sores used to last a month or more and they were one after another (I had maybe a day or two before a new one would appear to almost drive me never to eat or swallow again).  Now they usually heal within a week to some days if they don't become "full blown" ulcers about 1/4 inch in diameter, (I get bumps and sore spots more frequently now).  At this time, I feel blessed and think that my body is just regulating around the Sprycel (if it is the Sprycel).  I have gotten mouth sores since I was a kid.  As an adult, I would get one every few years, if I did.  And it was always from some kind of mouth injury.  Since Sprycel, they just seemed to appear for no reason (it is hard to injure the space under your tongue).  It is possible the Sprycel is just aggravating a pre-existing condition, or this was to happen anyway.

By the way again, there was no correlation, (well, not an actual scientific one), between my low ANC and the sores (for a while I struggled with low ANC).  When my ANC was at its lowest, I didn't get them, (go figure...).  I always got them bad when I was severely anemic, but then, I got them bad when I wasn't, and still do now that I am not (anemic).   You may be totally different, so keep an eye on what may bring them on.  Mine remain a total mystery.  And, there are people out there who suffer from chronic mouth sores who are considered absolutely healthy.  However, it is hard to rule this out as a TKI side effect in our case.  But it gets even more perplexing when most people on TKIs do not suffer from this.

I wish you relief.  Sorry if this is too much information.  I hope it helped in some way.

Take care,

Tedsey

[ritan/]

in someways saying that there probably isn't much to do is helpful. unless my onc can come up with a solution i guess i'll figure out how to live with this. i suppose maybe if i switched meds i'd see a change, but not necessarily, so i guess maybe this is not a pushing point for change.

[mcfowler33]

I've been dealing with mouth sores since diagnosis about 18 months ago.  I would have no less than 5 at a time and they were all very painful.   At first, we tried all the over the counter stuff and magic mouthwash, but like you said it only numbed it for a while and really did nothing for prevention.  I have also had super low blood counts throughout this and that is where the mouth sores really creep in.  I have been hospitalized several times because of neutropenic fever that we believe each time originated from my mouth sores (they were never able to get anything to grow on any cultures and never found any other possible cause). 

At any rate, the first time I was in the hospital with this mysterious neutropenic fever they started giving me antibiotics and antivirus because they didn't know what else to do.  In the 4 days in the hospital that time my mouth sores got considerably better during and just after that stay.  Then, when the prescriptions were gone the sores came back. 

So I talked to my CML specialist and we decided to just try some antivirus as suppressive therapy.  Man, what a world of difference!  We started on Acyclovir, which was much better but would still have some breakouts.  Finally, we went to Famciclovir and it is awesome!  I have breakouts from time to time, but NOTHING like it was before.  I would bring it up to your doctor(s) and see if it would work for you.  I would have gone plumb crazy by now without those mouth sores gone.  They are one of the worst side effects of chemo if you ask me.

Good Luck,
Marcus

[scuba]

I had mouth sores bad after starting Gleevec and my blood counts fell (myelosuppression). I did note a correlation between my ANC levels and frequency of mouth sores, but it's probably coincidence given Tedsey's opposite experience. What I did do to eliminate mouth sores (I haven't had any since) was to add vitamin B12 and folic acid supplementation (http://voices.yahoo....se-2273818.html) which definitely reduced the severity and healing time and I started taking Curcumin regularly (I take 8 grams per day). A very good treatment while you have sores is to wash your mouth and gargle with salt water. (one/two tablespoons in a glass of water). It was very soothing.

[0vercast]

Just a thought, but it's worth considering that stress may be the cause.  I have had a few major breakouts in the past few years in times of extremely high stress, including during the breakup of a long relationship, after the death of a close family member, and just after my CML diagnosis.  I tried just about every treatment I could, even visiting the doctor twice, but the only thing that worked was to gradually reduce my stress.

Each incident lasted between 1 to 3 months and consisted of 3-5 white ulcers (2-3mm wide) located on the sides and underside of my tongue and on the insides of my cheeks and lips.  Each ulcer would last about a week before it would heal and be replaced by another.  It surprises me how much they hurt.  Every once in a while when I get a little stressed out, I will get another one or two, but that's it.

[Tedsey]

I must live on stress!  Heh.  Very recently, I took my bleeding toddler to the ER.  The day after, I broke out in a few places on my tongue and cheek.  I have no trouble believing it is stress.  My body does not handle stress well (but I suspect I blew out my stress box since my last ER visit--some kind of weird calm came over me after we got home--we will see if it lasts).  I have always suffered skin rashes too, but not as bad now than I am an adult.  Anyway, I started taking 8g curcumin daily for the last 3 months.  Previously, I took a lower dose and the sores got better quicker.  However, I find at 8g, my sores are most often "sore spots" and go away in a day or two (instead of a full blown ulcer that lasts a month or two).  It appears it does wonders for my nails too.  I stopped taking if for a while and my nails got weak and the sores got bad again.  It appears to really help me.

Teds