Jump to content


Photo

Mouth Sores on Sprycel


  • Please log in to reply
9 replies to this topic

#1 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 08 September 2011 - 09:05 PM

It appears Sprycel may cause the rare side-effect of mouth sores in some people.  I believe I have been a victim.  I did not have this problem on Gleevec (9 months).  As 2 dentists and 1 oral pathologist sent me on my way and could not help me, I had to do SOMETHING to relieve my suffering.  Believe me, I would rather go through child-birth over and over than be tortured by these ulcers.  Anyway, after trying a bunch of vitamin, anti-oxidant, and probiotics (with approval from my onc and the onco-pharmacist---however the nutritionist had issue because some of what I was taking could "interfere" with chemotherapy---pretty sure she has no inkling of what a TKI is, its chemical properties and drug reactions--so, I ignored her advice).

Very recently, I started taking 50 billion active cultures of a probiotic mix.  I originally took L-lycene at 1500mg.  But that alone did not seem to work.  Now I just take 500mg per day along with the probiotic.  This combo to be working.  Now I get some sore spots in my mouth, but they are usually gone within a few days and never develop into ulcers.  I am so grateful.

I just wanted to share this.  I researched and searched desperately on my own for relief.  I am not suggesting anyone do this without the blessing from their onc, just wanted to report what is working for me.

Best of luck to my fellow mouth sore sufferers,

Teds

P.S.  When I was taking Gleevec, I developed severe anemia.  When I switched to Sprycel, the anemia improved considerably, but I started to get mouth sores.  From what I have read, anemia may cause mouth sores to develop (and low neutrophils, but my ANC has been around .9 and above).  However, I did not get the sores when the anemia was so bad on Gleevec, (HGB mostly steady at 5, but sometimes lower), and my neutrophils bottomed out (lowest measured at .2).  It was not until Sprycel that I had such a severe problem with ulcers (mostly on my tongue).  It is quite possible, since the anemia has improved, that is why the sores have also.  However, I am unsure.  All I know is that I can now read to my children and eat with pleasure, and in public!     



#2 lehrerin

lehrerin

    New Member

  • Members
  • Pip
  • 4 posts

Posted 09 September 2011 - 09:41 AM

Glad you are doing better!   I'll keep this in mind.  Jury still out on if we are switching drugs or not.



#3 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 09 September 2011 - 04:10 PM

It is very good to see that you have found some real relief from that nasty condition.  Maybe you will also help others who have suffered with mouth sores.  Good for you, Teds.



#4 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 09 September 2011 - 05:48 PM

Hey, Tedsey. . .I'm wondering what your mouth sores are like.  Twice now since Sprycel, I've had blister-like things on the end of my tongue.  Very painful.  They last about 3 days and then go away, but while I have them, it's hard to eat, and whenver I bump against them with my teeth, it hurts!  Also, since TKI's I have been getting the wierdest zit, right on the edge of my top lip, where the two sides come together.  It bleeds like crazy if I just barely bump it, and it won't stop bleeding for anything.  So I end up walking around for a few days with a dried blood clot on my lip/skin line, just hoping it doesn't get bumped.  

On the other hand, my bmb came back undetectible, so that was very welcome news.  I really, really like the new doc.  When he faxed me the report, I could see that he had actually read and understood it, and had written notes on it.  Very unlike my other doc, who I think didn't have a handle on much of anything.  I'll be seeing my even newer interim doc in a couple of weeks.  Sheesh!  This insurance crap is driving me crazy.

Marnie



#5 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 09 September 2011 - 09:51 PM

Hi Marnie,

Not that I'm looking to panic you, but it might be worth getting that spot checked out by a doctor if you haven't already. It sounds a little bit like a sun cancer spot - hopefully not, but worth checking out.

Congrats on finding a doctor you like.



#6 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 09 September 2011 - 09:58 PM

Actually, I'm pretty sure it's a menstrual cycle sort of thing.  That damned zit on my lip shows up like clockwork, though it is definitely a post-TKI thing.  Course, maybe it's an "old age" thing. . .hard to tell anymore.  I think I got lucky this month. . .period started this morning, and so far, no zit on my lip.  Knock wood. . .no doubt it will show up tomorrow. . .

Anyway, I'll keep your input in mind and monitor the darned thing.

Marnie



#7 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 11 September 2011 - 08:58 PM

Dear Marnie,

My sores are like deep ulcers, or holes. The tongue ones can look like this or larger. Totally gross.  Try french kissing with that.  Very painful; especially when I have multiple.  I have a smaller one right now on my cheek.  It may have popped out because I am getting my period and I didn't take the probiotic a couple days.  I am still not sure if my period plays a role in this.

The sores on my tongue sometimes start out as little red bumps.  Kinda look like little zits on my tongue.  The others under my tongue and cheeks and hard gums look look similar to this: .  I have almost had holes through my cheek and tongue (at least it seemed that way).  I am glad yours don't last longer than a few days.  In the past, it would take a month or more to heal.  Since I have been doing this anti-oxident/probiotic thing, I tend to mostly get sore spots like you mention.  Then they go away after a few days.  Totally know what you mean about the bumping into the sores that cause horrible pain and bleeding.  My kids tend to zero in on the spots where I am most tender and hit me there repeatedly.  It is like they have x-ray vision.

Very happy to hear things are going well with your new onc!  AND that you are undetectable!!!!!!  Awesome!  May it stay that way forever and ever and ever until you are so old you cannot keep your balance on your bike anymore.

All the best,

Tedsey

P.S. Kanka from Blistex is really great at numbing the exact spot where the sore or sore spot is.



#8 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 11 September 2011 - 09:02 PM

By the way, these are not photos of my mouth, (I've never actually photographed the angry little devils that torture me).  I found the pics through Google Images for "severe apthus ulcers".



#9 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 11 September 2011 - 09:27 PM

Tedsey. . .didn't even cross my mind that the photos might be of your mouth.  The internet really can be a fantastic resource, though a bit scary at times.  The first pic is not at all what I have. . .though the second one, perhaps.

It sure seems to me that foot pain and mouth pain are THE WORST to tolerate.  Anything else you can forget about, but those two places are just awful.

My latest depressing thing is that I happened to catch a glance of the back of my head in the mirror and realized that I have two huge swatches of total gray swishing from behind my ears to the back of my head.  When did THAT happen??!!  I am now grayer than my 10-year-older husband!  And it's not an attractive or distinguished gray either.  It's just plain ugly.

AND. . .new pharmacy had a new information form for Sprycel, one that I hadn't seen before.  The potential side effect??  Enlarged breasts. . .but could I ever hope to benefit from that one???  Of course not.

I'm feeling extra attractive right now. . .gray hair, tongue blisters, and small bosom.  Well, dang.



#10 Tedsey

Tedsey

    Advanced Member

  • Members
  • PipPipPip
  • 85 posts

Posted 12 September 2011 - 12:41 AM

May this never happen to you guys--ever, even if the switch is made, (and I say, it appears to be relatively rare, so you got that on your side).  Keeping fingers crossed for the the best results!  Keep me posted!  






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users