6 replies to this topic

[Teresabourgeois]

I am newly dx with CML.  The issue that brought me down the path to even find out what I had was my tongue.  I started having thrush like symptons months before dx.  After cultures and 3 doctors, I found out that it wasn't thrush.  I've been on Sprcel for almost 3 months and still have tongue problems.  It drives me crazy which is a short trip 

Has anyone else experienced tongue problems?  My doctors do not know what exactly this problem is.  Surprised? not me

[lala]

hi---welcome to our club!!!!    i have read about a special mouth wash for mouth problems....someone here will respond soon----this is a great site!   really nice people who understand cml!

~lala

[rct]

One of the problems a cancer patient has, due to both disease whether in remission or not, and the medicines used to treat, is an imbalance in the saliva.  I don't fully get it, went to a seminar once concerning oncological dentistry.

My Mrs uses Biotene.  Toothpaste, rinse, gum.  That change has changed her mouth, tongue, gum problems a whole bunch, so I suggest giving it a whack.  It helps to balance the saliva, creating the right PH?  Something like that.

For specific wounds, thrush, things like that, usually Magic Mouthwash is prescribed, it is Pepto, Benadryl, lydocane.  Don't know the ratios, docs use all different ones.   It too does miracles, we keep it in the refrigerator at all times, and when needed it is a life saver.

rct

[Tedsey]

I have had severe tongue and oral sores since Sprycel.  I literally have holes (scars) on my tongue like acne after they heal.  And I have lost feeling where the sores were.  I try to pretend they are from tongue piercings.  They can be extremely painful.  It is often hard to sleep and eat.  Anyway, I went to see an oral pathologist/dentist.  He mixed me up some Maalox, and some other stuff.  It totally didn't work.  But what I found extremely helpful, is an OTC salve called Kanka.  It numbs the site for at least 20-30 min.  And adds a bit of relief.  It is better than anything a dentist has given me.  It also puts a thin coating of wax or someting on the sore so it is protected from food, etc.  I use it like it is going out of style.  I was told my severe anemia has a lot to do with my mouthsores.  I also noticed they worsened with taking Sprycel, but I have always had issues with mouthsores (probably always had a weak immune system).

Wish you the best.  I know how debilitating and utterly tortuous these sores can be.  Mine last for a month or more and, like I said, cause scars on my tongue.  I live for the days I don't have them.

Hope you find some relief soon,

Tedsey

[Teresabourgeois]

Thanks for the information.  I am new to this site and loving it.  It's the best place on the web to get real questions answered by others with CML.  I hope you are well and continue to stay well.  

[jrsboo]

Dear Teresa,

Well, once again this morning huh?  The mouth sores are caused by the TKI's.  My onc sent me to the oncology dentist at the Cancer center and she explained that the lining of the mouth is completely replaced every two weeks (this helps maintain a nice atmosphere, since we are constantly putting stuff in there!), and the TKI's inhibit the growth of fast growing cells.  So there are portions of your tongue that are not growing back as fast.  Thus creating the areas that look like thrush, and feel like debrided tissue.

I get them in cycles, about every 4 or 5 days a new round starts.  I use Magic Mouthwash that is made up for me at the Cancer Center's pharmacy.  I tried to have the prescription made up at a Walgreens and they had no clue, needed to call the doctor, etc, so I just took the script back and when next I went to the onc's I had it filled.

We seem to be having very similar experiences with Sprycel.  If you want to contact me directly and compare more notes, just leave me a private email here with contact information for you, and I will call you or email you directly.

Hugs,

Caroline

[Happycat]

Welcome to the site, Theresa!

No real help on the mouth sores,since I don't get them often.  I'm on Gleevec, which makes me wonder if this is primarily a Sprycel thing.

I agree with Tedsey that the Kanka is very helpful.  For the few times I've had mouth sores (other causes), it's been very helpful.

Traci