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Sprycel and mouth sores-Help!

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#1 JLS


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Posted 29 August 2011 - 05:09 PM

I have been on Sprycel for 6 months now, I have been battling canker and other mouth sores.

I am not sure what to do.

I have tried a dental rinse, it helps but after one clears up another comes. I use magic mouth rinse just so I can eat, but that is only temporary.

I am looking for something that will stop me from getting these terrible sores almost weekly.

Sometimes I have four or five at a time, last month I had them in my throat, it is so painful I can't even describe!

Other then these soars I feel great on this medication, (100 times better then when I was on Gleevec), I really hate the

thought of having to switch again due to this problem.

The doctor talked about putting me on a daily medication for cold sores? However he doesn't seem too sure that

it will help.

I don't know if I feel like trying something else that might also have side effects. Especially if its not really going to help.

I have read several post that this is something that Sprycel users suffer from.

Please Help if you can!


#2 scuba


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Posted 29 August 2011 - 06:05 PM


Been there done that regarding mouth sores.

A few points:

1.  If your Dr. thinks these are cold sores get a new doctor.  Cold sores are caused by virus - specifically the Herpes virus.

2.  Canker sores are caused by lack of Neutrophils in the mouth COUPLED with an irritation.  Irritate the mouth lining and without Neutrophils to defend against the bacteria that feast on the opening - you get a canker sore.

3.  You have to eliminate what causes the irritation.

a. no Sodium Laurel Sulphate toothpaste - which means you have to buy the non-sudsing kind.  BioTene is my recommendation.

b. no peppers, spices, mexican food, Indian food (Trey: I'll get to that in a minute), or otherwise the fun stuff in life including alcohol and Pizza - w/ pepperoni.

4. You have to boost your immune system:  Drink Beet juice.

Also - in my view - you have to have a CBC and check your Neutrophils.  Mouth sores are usually sign of low Neutrophils.  My mouth sores began when ANC < 1.0  And they were horrible.  But I reduced them substantially when I cut out the Sodium Laurel toothpaste alone and switched to Biotene.  ANC above 1.0 usually gets you by ... so check on your ANC.  You may be myelosuppressed and don't know it.

You may need to cut back your Sprycel level - but do so only with Oncologist supervision.

Good luck with this - the only solution is when your Neutrophils increase in your mouth.  You need lots of saliva for that.  So if you have dry mouth at night, in particular - then you have to find a way to keep your mouth wet.  Personally, my wife helps me out there.

On Indian food:  I eat Indian food.  If it causes mouth sores - to hell with it - I eat Indian food.  Love the Curcumin in Indian food.  And hell - no way I'm giving up wine - so a second whammy in the mouth.  And Pizza - once per week I can handle it and do so only with Adult supervision.  Mouth sores avoided.

All the best

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#3 Trey


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Posted 29 August 2011 - 09:31 PM

I have found that putting a calcium-based antacid tablet (TUMS or equivalent) directly on the sore and leaving it there to dissolve is a good way to make them go away faster and reduces the pain.  There seems to be an acidic issue with the sores (not the food you have eaten, but the sore itself).

But as Michael says, the root cause is likely low neutrophils, so have your doc check the neutrophil count to see if a drug break is needed due to very low neutrophils.

#4 Tedsey


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Posted 29 August 2011 - 11:22 PM

Dear JLS,

I have been on Sprycel a year and I have the same problem.  Right now, by some miracle, I am sore-free.  I have been for about 5 days (the longest stetch ever).  I totally empathize with how painful they are.  I have deep scars on my tongue and cheeks.  I ran to a dentist who then referred me to an oral pathologist.  Sadly, there is not much that anyone can do.  I know how horrible it is when they last for over a month.  I just accepted the fact that if I wanted to stay on Sprycel (which I also felt great on otherwise and still do), that I would have to endure the pain.  I saw it as, "it is better than being dead".  This pain and agony had to be worth going through to see my kids grow up.  But, needless to say, it totally sucks.  I am not sure I ever had worse pain.  I'd actually take a BMB and childbirth over the chronic sores (or should I say gaping, ulcerated and bleeding crevasses in my mouth).  There are times you cannot talk, eat in public, or just eat period.  I so understand.

Sadly, I found that the mouthwash mix the oral pathologist made me did not really work.  It numbed all other parts of my mouth, but did little to numb the sores.  Canker Cover works well to patch the sores (sold at Whole Foods Market and most drug stores).  They are usually big enough to cover the large ones.  You can also break them apart for the smaller ones.  It helps.  Blistex Kanka does the best at numbing the pain for the longest amount of time, (much better than anything a dentist has given me).  However, it is very sweet and has an icky taste.  It has a coating that falls off immediately, but it is worth it.  There is also Zilactin B, which does an OK job at numbing the pain, but has a great sealant that lasts almost an hour (it claims 6 hours, but I am not sure on who or what).  Again, Kanka has the longest lasting pain relief.  Those are the best things I have found in my desperate search for relief (after the medical professionals gave up on any hope for me).

The only thing I can think of to help overall would be a lower dosage of Sprycel.  If you attain a good response (i.e. MMR), that may be possible.  I have also been taking L-lysine every day.  I up the dosage to 1500mg when the sores get really bad (holes or multiples all over my tongue and down my throat).  It seems to help a bit.  I also use mouthwash to rinse and a toothpaste without sodium laurel sulfate.  Healing-scents.com has a very mild toothgel.  It is not as strong as regular toothpaste, but it does the job and it totally non-toxic.  There is also a brand called Toothsoap.com, but I found it causes me dry mouth, which I never had before using it, but you may have a different experience.  I really liked it and felt it cleaned my teeth well.  You just gotta get used to the slightly soapy taste and mint or whatever flavor you choose.  Neither of the two brands I mentioned are sweet.  So, you have to get used to it.  Oh, I have tried zinc, Maalox and the like, and DGL, but other than a good taste, (except the Maalox---ickkk), I find it helps little.

Anemia is also associated with mouth sores.  So, if you are low, this could add to the problem.  However, I never had mouthsores when I was on Gleevec and almost dead from lack of red blood cells (seriously folks).  I believe mouth sores are a nasty Sprycel side-effect for the few of us fortunate ones.

Best of luck to you.  I hope what I suggested helps.  Here is to your body adjusting soon and kicking those slow moving cells in your mouth into major mitosis!!!!  As it slows down leukemic cell division, it appears dasatinib slows down those of the mouth as well.

Take care,


#5 Guest_billronm_*

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Posted 31 August 2011 - 03:24 PM

Dear JLS,

My onc gave me a prescription for bmx mouth wash. They mix it at the pharmacy. It has definitely helped me a lot. It is lidocaine,benedryl, and maalox, All I do is swish about a tsp or less and swisch

in your mouth for 2 minutes, then spit it out.

                                                                      Good Luck Billie

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