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Does anyone have issues with narrowing of throat?


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#1 dennyzb

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Posted 15 June 2012 - 09:50 PM

I have been on G for 2 years and am lately having a lot of trouble with swallowing and my throat is narrow. I am having trouble swallowing water and any pills including the "G"

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I am having Barium swallow next week. Just wondering if anyone else has had this problem?



#2 Happycat

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Posted 15 June 2012 - 10:04 PM

Denny,

My dd was just officially diagnosed with eosinophilic esophagitis, which causes exactly that problem. She's only 9, so the narrowing for her isn't that bad yet. It's basically a hidden allergy response to foods that causes narrowing and inflammation in the esophagus.

If EE is a factor for you, the barium swallow is a good first test. It will show gross problems, but for someone like Em, the inflammation wasn't bad enough to show up with barium.  She was placed on high dose Prevacid for 8 weeks, to control any GERD, then had a biopsy after that to look for eosinophils in her esophagus. That's how they distinguish between GERD and EE.

There are other esophagus problems (GERD, schatzki's ring), that can cause narrowing. And, unfortunately, there is cancer (my dad died from it, one reason I got Em into a GI specialist).    GERD is a typical cause, and if you have reflux from gleevec, it could certainly be a factor.

Anyway, you might end up with an endoscopy after the barium test. 

HTH and good luck to you,

Traci



#3 CallMeLucky

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Posted 15 June 2012 - 11:06 PM

I get this from time to time and appears to be edema related.  You may need a diuretic.  Try cutting back on salt big time and see if you get any relief.  To be on safe side, you should call your doctor and let them know.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 kellbell

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Posted 16 June 2012 - 07:57 AM

I have problems with my throat feeling narrow.  It comes and goes. Ive taken sprycel for I think 5 months now. I remember it started right around the time I was dx in Feb.this year. My neck and throat area feels so full and uncomfortable sometimes. My muscles in my shoulder, neck and upper back area are very tight also so at times I am so uncomfortable. I just thought Id share my experience, I dont know what it is but I wonder if its swelling or edema related.  It seems to be fine when I eat healthy and get exercise.



#5 Trey

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Posted 16 June 2012 - 08:45 AM

Before Gleevec I never had a problem swallowing pills, but now it is difficult.  So I take the 100mg Gleevec pills, which are small and very easy to swallow.  TKI drugs can cause swelling of soft tissues, which can occur in the throat, ears, nasal passages, etc.  I don't know of any useful remedy that will work.  I would not use a diuretic for such issues because it dries out the entire body.



#6 dennyzb

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Posted 16 June 2012 - 05:39 PM

Thank You for your responses; I quess I will be waiting on results to see what going on. My entire body does feel dry as Trey stated; It seems as the G as affected many parts of my body. I have not felt good since before CML DX. There are a lot of people who act as they feel fine on G; Wish I did because I do not!



#7 Susan61

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Posted 16 June 2012 - 07:14 PM

Hi:  It could be a lot of different things, but the best test is for them to do a Endoscopy.  Sometimes you  just need a dilatation of the esophagus, and it can be done during a endoscopy.  I hope you get the results with the barium swallow.

     Trey mentioned swelling of soft tissue, and everyone is telling me that I am getting hard of hearing.  I am wondering if it is related to my Gleevec.   Let us know how your results come out.

Susan



#8 Guest_billronm_*

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Posted 17 June 2012 - 02:45 AM

Hi Denny,

  I know how you feel when you say you are all dried up. Me too. My opthamologist has me using 2 kinds of eye drops, refresh 4x a day, and syntec 2x a day they really help me. I went to an ent 2 years ago, and I have suffered hearing loss,and my nose is always so dry it drives me nuts, he told me to use crisco solid shortening for my nose. So I took an old contact lens case, and put some crisco in it and when my nose feels dry, I just use it like I would vicks. I have acid reflux so I have to get an endoscopy every year. My mouth gets so dry because I have to take bp medicine plus a water pill, Sucking on hard candy, or life savers, even altoids helps

me. It seems like it's easier getting our cml under control, then dealing with these annoying side-effects.I can't believe I'm snorting Crisco!      Lots of Luck Billie



#9 dennyzb

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Posted 18 June 2012 - 05:16 PM

I have has terrible acid reflux also... barium swallow was not bad (nothing compared to BMB)  just have to wait on ENT to get results.

Maybe I will try Crisco!!Thanks



#10 Trey

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Posted 19 June 2012 - 08:19 AM

Susan,

My ear canals have narrowed since starting Gleevec.  I think the "hidden edema" issue is not widely recognized.  It has affected my ears and throat more than anything else. 



#11 dennyzb

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Posted 19 June 2012 - 01:09 PM

That is scary...My ears and throat are both bothering me. Hidden edema is new to me. My ear canals are narrowing also, they crack and pop;



#12 dennyzb

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Posted 19 June 2012 - 01:14 PM

Traci,

Do you know what foods? (  It's basically a hidden allergy response to foods that causes narrowing and inflammation in the esophagus.)



#13 LivingWellWithCML

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Posted 19 June 2012 - 01:40 PM

I get this a bit as well (Gleevec 400mg for 14 months).  I saw an ENT about it and he said that my saliva glands were mildly swollen.  Although he blamed dehydration, I believe it's hidden edema from the TKI.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#14 dennyzb

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Posted 20 June 2012 - 01:51 PM

I am seeing the ENT next week, but for now they have me on nocturnal oxygen as my desaturarion levels are bad. I think it is because of my throat being swollen. I am hoping for a solution. Did the ENT basically dismiss it?  And what advise did he give you?






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