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Crazy question about mouth pain

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#1 snowbear


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Posted 22 December 2015 - 02:23 PM

Crazy question, but first I would like to say that I have "Inflammatory Arthritis" in addition to CML.  Docs were/are not sure if it's RA or Lupus and the CML diagnosis only confused them even more.  I've been on Gleevec for a year and I still get joint pain, fevers, rashes, swollen glands, and swelling/sores inside of my mouth and nose (which may or may not be a side effect of the Gleevec). 


However, the other day, I had a six hour road trip in the sun and with the heat on.  By the time I got back home, my face was flushed, my lips chapped and burnt, and the inside of my mouth badly swollen. By the next morning, my face had calmed down but the swelling was even worse with several ulcers.  My Onc had given me Magic Mouthwash which had helped with previous ulcers, but this was the worst it has ever been and it seemed to be triggered by the sun & heat exposure.  I've been taking Motrin & Tylenol, using the mouthwash, vinegar rinses, and even holding an ice pack over my mouth.  It's still painful to talk or eat.


There has been some improvement in the blistering on the inside of my cheeks, but the connective tissue between my bottom teeth and lip is still swollen and very red.    I don't know if I'm having an allergic reaction, a bad case of mucositis from the Gleevec, or an autoimmune reaction to the sun and heat.  In any event, I'm thinking it might take a topical steroid or injection to get this swelling down.  But who do I call....my rheumy, Onc, dentist, ENT, or just my PCP?  Anyone else experience this on Gleevec?

#2 Gail's


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Posted 22 December 2015 - 02:46 PM

I suspect the heat and possibly an oral herpes (aka cold sores) flare up. Have you had the sores cultured?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#3 mlk210


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Posted 22 December 2015 - 08:46 PM

My mom has Lupus and a couple other auto immune diseases. She's extremely sensitive to the sun so much she wears hats and long sleeves when going outside in the summer. Maybe it's a combination of a few things. As far as who to call, I'd choose one and they should be able to point you in the right direction if they can't help you.

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable


#4 Billie Murawski

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Posted 23 December 2015 - 02:00 AM

Snowbear, I feel so bad for you, I hope your mouth clears up soon, I would probably buy a baby teething ring or anything else that helps. It's so hard when you're dealing with so many different problems. My doctors have always told me to call my pcp and they take it from there. If it was me I'd get into the frozen margaritas, the salt would be good for you it's always 5:00 somewhere.    Billie

#5 snowbear


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Posted 23 December 2015 - 12:43 PM

I saw PCP today.  He says it looks like inflammation of the mouth and salivary glands that occur with autoimmune diseases. He gave me a steroid med and wants me to see an ENT and Rheumy.   


Billie ~ I like the way you think, lol

#6 tiredblood


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Posted 24 December 2015 - 06:23 PM

So sorry to hear about your mouth problems. I hope the meds have you feeling better today.

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