39 replies to this topic

[pammartin]

Glad your appointment is soon, hopefully you can find answers to your concerns.  Best of luck

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Thanks Pam me too.  My onc office arranged it that was quick.   I will keep you posted.  Thanks again!  

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Hello!  I just wanted to let you all know that it is just a large taste bud!!!! That is actually what I initially thought it was.  God is so good to me.  

[Antilogical]

It is the Snickers taste bud.  Feed it, and forget about having CML for a moment.... 

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Oh yeah!

[Gail's]

Great news! Maybe it's so big because it tastes all of your favorites!

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Thanks.  LOL that has to be it Gail. 

[Billie Murawski]

 I have never heard of such a thing, will it go away on it's own? Does everything taste better now 

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LOL he said it is normal I think that it may be just a little bigger but I also think that because it is so far back on the tongue we just don't see it yours is probably the same size or close to it too.  I can only see the front of it.  I think that something aggravated it and that is how I noticed it but it ever hurt just felt like I was swallowing something but that went away after a week.  I am just so thankful that it is nothing.  I think God knew I couldn't handle anything else.

[Billie Murawski]

The good thing is you'll start to realize that not everything is cml related.

[LAC1223]

This chain caught my eye... Thank goodness my sores haven't been in my mouth - but I have been having an awful time with my lips. Cold sores, peeling lips and cracked corners on my lips.  Nothing works (I've spent like $60 just on different lip balms and salves).  I have never had anything like this before, so of course - my immediate thought is my meds.  On 100 mg Sprycel.  It's been really bad for about 2 weeks now.  Go to my Onc next week, but he probably will tell me it's the dry air of winter or the fact that I am getting old... I'm just 54, but every complaint I have seems to be blamed on my age by my doctor and on the meds by me 

 

Now I know others have had issues with mouth sores - anyone had problems with their lips?  Right now, my lips feel as if they are twice their normal size.  Any tips?

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My lips always have dead skin on them now and the more I scrub them the more there is. I will take that over mouth sores any day. I just have to stay on them all day so they don't look bad.

[Billie Murawski]

Hi LAC,

  I don't know about the cold sores, but your lips might be very dry because you don't drink enough water. I had a similar problem when I was on Gleevac and it was probably because everything went right through me. Try to drink at least 4 glasses of water a day and see if it helps. As soon as I was taken off G I had no problem. I have about a dozen different tubes of chap stick laying a around too. I just wanted to stick my lips in a jar of vaseline.      Good Luck Billie

[LAC1223]

Hi LAC,

  I don't know about the cold sores, but your lips might be very dry because you don't drink enough water. I had a similar problem when I was on Gleevac and it was probably because everything went right through me. Try to drink at least 4 glasses of water a day and see if it helps. As soon as I was taken off G I had no problem. I have about a dozen different tubes of chap stick laying a around too. I just wanted to stick my lips in a jar of vaseline.      Good Luck Billie

Thanks Billie... trying to up my water intake, will continue to do so.  Just weird how they alternate between buring, dry and numb, but I agree with mrsdeejay4life, take this over mouthsores anyday!

[Gail's]

Billie I drink 2 quarts of water a day and still have dry peeking lips on gleevec. I'm trying to picture a face with a Vaseline jar stuck to the lips. Ha ha

[Gail's]

Peeling lips. Typo!

[dede5]

My lips peel constantly. Never had that before CML. I also have multiple cold sores both on lips and inside my mouth pretty regularly. Before CML, I could count on one hand the times I've had cold sores. I figure it's due to the sun or stress. The peeling is year around.

[Billie Murawski]

Gail, I think I bought this jar of vaseline 40 years ago. It is a huge jar, big enough for my lips and they won't get stuck because they're all greased up.  Who knows, it might be a s-e of G,I've never heard of chapped lips as a s-e but nothing surprises me anymore as far as side effects go. You're drinking plenty of water still dry lips, All I can say is mine were fine once I went off G  very strange indeed!

[Billie Murawski]

Hi dede, I had some friends who used to get together a lot and play peeknuckle(I'm not looking that word up). Two of them used to get cold sores all the time especially after they played cards it turned out that peanuts were causing them. They took lysine.

[Gail's]

My skin in General is drier since gleevec, Billie, so my lips joined in. Those big jars were amazing. My niece found one when she was a baby and painted her head with it. Multiple shampoos later, she was still greasy!