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Swollen Salivary Glands


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#1 cmljax

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Posted 09 April 2017 - 08:01 AM

About 4 - 5 weeks ago, I developed 3 - 4 really bad ulcers on the underside of my tongue which too about 12 days to get better.  Just as I my mouth was beginning to feel like normal, my sublingual salivary gland swelled up almost instantly at about 8 PM accompanied by a very dry mouth and difficulty swallowing. The situation improved a bit the next day and continued to improve although a second round of mouth ulcers followed, but not as severe as the first. Saw my PCP and he thought it might be a stone in the gland so he massaged it and it continued to feel better. He also prescribed Carafate for the ulcers. Within a few days, my mouth was again almost back to normal. 

 

Then, again almost out of the blue I had a repeat attack a few days later of the swollen gland with identical symptoms followed by a much less severe outbreak of a couple mouth ulcers. With a few days, the mouth was again feeling better.  Last Friday, I saw an ENT specialist at Mayo.  He examined me and said he was almost certain it was an autoimmune response cause by the cumulative effect of my TKI medicine (Tasigna). He ordered a CT scan of the neck to rule out stones or any other masses.  He said he was 99% certain it was not another cancer. He said to try Biotene mouthwash. I have but it is not very effective for very long.

 

Last night, same thing again, although this time the whole left side of my face puffed up and got numb and my mouth was extremely dry. My mouth is less dry this morning and some of the swelling has subsided.

 

Obviously there's a pattern here and it might be getting worse in terms of the severity of the outbreaks.  Mouth ulcers have improved a lot but the salivary gland issue seems to be getting worse.

 

Has anybody in this group had anything like this, and if so, what was your diagnosis and how have you treated the problem?  Has it gone away, and if so, how long did it take?


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative


#2 soundoff

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Posted 10 April 2017 - 07:39 PM

Yes I have had the same thing over the same period. Not a coincidence.

Lot number F0046
EXP AUG 2018

LOT number F0077
EXP JAN 2019

Anything match up?

Soundoff

#3 cmljax

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Posted 11 April 2017 - 09:35 AM

Current Batch of Tasigna does not match these lot numbers. Do not know previous lot numbers.  Sent you a PM with more info and more questions for you


Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%

Tasigna 600MG per day

October 2016                     PCR 22% IS

November 2016                 PCR 5.8% IS

December 2016                 PCR 0.1% IS  MMR!!

March 10, 2017                 PCR 0.006% IS  MR 4.22

Tasigna 450MG per day

April 5, 2017                      PCR <.003% IS

June 5, 2017                     PCR <.003% IS (dose reduction validated!!!)

Tasigna 300MG per day starting June 15, 2017

6-day drug break starting June 20, 2017 due to multiple AE's

July 24, 2017                     PCR <.003% IS

September 18, 2017          Negative, AKA PCRU

Tasigna 150mg per day starting 9/18/17

October 30, 2017               Negative

December 11, 2017           Negative





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