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Reflux from Hell - questions about which TKI can help better


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#1 cometbro

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Posted 10 June 2011 - 06:28 AM

So i've been to the ENT about 5 times now since my reflux continues.  This is mostly at night time when sleeping.  The head of the bed is raised, i'm taking Omeprazole 40mg 2x daily, and 1 Zantac 150mg right before going to sleep.  I still feel acidic sensation in my chest and throat and my sleeping is still disrupted.

They want to do an exam called Fluoroscopy esophagram barium swallow, and also, set up an appointment with a Gastroenterologist so they can check down my stomach.  My ENT diagnosed me as now was having Gastroesophagael reflux with nighttime laryngospasms.  He even wants to set an appointment for me with a speech therapist??(don't really see how that could help)

So my questions are:

- Is another TKI (maybe Sprycel) better against reflux?

- Is another TKI better against eyebrow hair loss? (my eyebrows are thinning every day)

Although i'm doing well (MMR at 6 months w/ Tasigna 150mg 2x daily), i'm really thinking about possibly asking for a switch because it is really getting annoying.  Any thoughts appreciated.  Thanks.



#2 simone4

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Posted 10 June 2011 - 10:05 AM

Hi, I had serious GERD afew years ago. Nexium is the only drug that

has helped.  If your GI doc referred you to a speech therapist, like they

did me, it is probably because when you had your barium swallow (test)

it reflected acid coming up as far as your vocal chords.  Aspiration is

a possibility if this true.  The only way to test this is having x-rays

of that area as the speech therapist administers small bites of food

and the radiologist tech watches that as you swallow.  Mine was

fine. But that is the reason for such an order. Sorry, but writing in

English has become almost impossible.  Hope this helps in

some way.  They may want you to take Nexium twice daily for a

while.

Take care and good luck.

Simone



#3 CallMeLucky

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Posted 10 June 2011 - 01:59 PM

Consider taking acidophilus supplements daily (check with your doc).  It won't be instant, give it a few weeks, but there is a good chance it will help.  It is a pro-biotic that heals and strengthens the stomach.  My wife had terrible trouble with reflux due to hiatal hernia and over time this helped her.

Hope you get relief soon.


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 cometbro

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Posted 10 June 2011 - 07:12 PM

Hey Simone, did you try any other PPI before the Nexium?  The Omeprazole (Prilosec) i'm taking doesn't seem to be working.  Do you still take the Nexium?  Thanks for the explanation.  Now I know what to expect.



#5 cometbro

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Posted 10 June 2011 - 07:19 PM

Thanks for the response Lucky.  I will definitely talk to my docs about those supplements.  Anything I can take to help.  The thing that sucks is that I never had this issue before the TKI...so I think as long as i'm taking this TKI, I will have to take medicine and supplements for this.  Maybe this pro-biotic is what I need, we'll see.  Thanks.



#6 cometbro

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Posted 10 June 2011 - 07:22 PM

I have another question that I'm hoping someone could answer.  I don't know how I forgot to ask this but my barium swallow exam is on Monday early morning.  I'm supposed to fast from Midnight before.  Can I at least take the Tasigna in the morning before the exam (normally I take it 8 a.m.) (exam is at 9am), or should I wait at least 2 hours after the exam to take it?

I don't know if Barium Sulfate will mix with Tasigna.



#7 simone4

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Posted 11 June 2011 - 12:36 PM

Hi, yes I took Prilosec when it was a prescriptive drug. It  quit

working 10 years ago and I have been on Nexium since. Ask

anyone with GERD and they will tell you Nexium is THE drug.

Good luck with the barium swallow. It is like drinking liquid

chalk, but a breeze compared to other diagnostic tests.

Simone

Message was edited by: simone4



#8 sschneck

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Posted 22 June 2011 - 09:09 AM

You can't take reflux meds with Sprycel.  sprycel needs the stomach acid to work.  I have had GERD for a couple years and take omeprazole.  I had it real bad a couple years ago a it caused a chronic cough so the Dr. doubled my dose for a while, 20 mgs morning and night which seemed to help.  Losing weight also helps as does eating less acidic foods and don't chew mint gum, that aggravates it.  Good Luck!  Will be starting Tasigna soon so hopefully it doesn't make my reflux worse...



#9 cometbro

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Posted 23 June 2011 - 08:30 PM

Hey sschneck, the Tasigna really tore up my insides.  If I were to ever take it again I would probably ask if I can take it with applesauce, a fruit, or some small piece of food so it won't go down my stomach alone.  I don't even get it.  I thought I had a really strong stomach.  I ate WHATEVER, WHENEVER.  Now i'm hoping I can recover from this.  Time will tell.

Thanks for the heads up on the Sprycel with the PPI.  I'm not sure if my Onc has that in mind, but he never mentioned anything with me taking Omeprazole and Zantac with Tasigna.  I will make sure ask him about it next week at my appointment (which i'll probably start Sprycel).  I also have an appointment that same day with the Gastroenterologist for the first time.  I'm going to ask him about that too, since i'm sure he's going to prescribe something for my current reflux/damage.

I'm wondering how the people that have reflux and take Sprycel do it right now.  Do they just take it enough hours apart or not take it at all?



#10 sschneck

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Posted 23 June 2011 - 08:53 PM

I saw this info on the Sprycel site.

http://www.sprycel.c...nformation.aspx

Ok to take Nexium etc. on Tasigna, but if you think the Tasigna is causing the reflux then you may not need anything.  Hope the Tasigna doesn't irritate mine!  Just started it today, so far so good...



#11 Susan61

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Posted 23 June 2011 - 09:54 PM

Yes, Nexium is definitely the drug to take for GERD.  I saw that Priolosec would be cheaper for me, but my doctor told me Nexium is the best choice.

Lot of discrepancy regarding using Nexium with TKI's , but for me it has been a life saving medication along with my Gleevec.  I started with the Reflux From Hell also as soon as I had started Gleevec.  I started the Nexium and have been taking it now for all these years since 2000.

This is definitely my choice to recommend also.

Susan



#12 Taylor

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Posted 23 June 2011 - 10:22 PM

Hi cometbro,

Actually, FWIW, the documentation I get with my Tasigna says you can open the capsules and put them into applesauce only and consume immediately.  So if you ever have to go back it might be worth a shot.



#13 motomom

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Posted 25 June 2011 - 01:51 PM

Has anyone tried Pineapple?  I know this sounds crazy but I came across this info on a GI forum, that pineapple juice and pineapple work well on heartburn, indigestion...maybe reflux also??  I know it has really been helping me since I found it a few days ago!  For me Sprycel does cause heartburn...required short term use of PPI, even though they are contraindicated.  Note that all PPI's are not the same. My doc said that different one's will work differently for each person.  When prescription Nexium was not working he suggested one of the three OTC's, Pepcid.  He was right, worked like a charm.  Using it for just a couple of weeks did not interfere with my CML progress at all.  Have now been PCRU for six months.



#14 Susan61

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Posted 25 June 2011 - 02:38 PM

Never tryed Pineapple for heartburn,, but I love it.  If I have any breakthrough heartburn I will have to try it.  Its true that everyone has to take what works for them, just like our TKI's.  What works for one person may not work for another. Same as these PPI's interfering with some people and their medication.  I have been PCRU for 7 years, and have been on the Nexium right along with it with no problem.   The other thing is I take all my medications at one time right after breakfast, and they advise to spread out the Nexium from the Gleevec by about an hour.

That Reflux is Definitely From Hell, and if anyone is having it from their TKI get something for it ASAP.

Susan



#15 sschneck

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Posted 26 June 2011 - 08:37 PM

I am going to try it.  Maybe I can get off omeprazole finally!  How much a day should I have?



#16 Susan61

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Posted 26 June 2011 - 10:17 PM

It probably does not matter how much you eat or drink of it. With me being Diabetic I will have to watch it, even if its in natural juices.

Like I said though I have no problems with taking my Nexium.  I would not go off the Nexium to try pineapples, but if  I get any breakthrough heartburn which I have had due to something that I usually ate that I should not have eaten then I will try it.

Susan



#17 GerryL

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Posted 26 June 2011 - 10:37 PM

From http://www.livestron...-remedies-gerd/

3. Pineapple Prevention

Believe it or not, one of the best natural remedies for GERD is also one of America's favorite fruits, pineapple. Pineapples contain an enzyme called bromelian which helps to reduce protein, improve digestion, decrease inflammation and speed healing, all actions which can soothe an aggravated stomach and prevent relieve acid reflux. It is important to remember that bottled or canned pineapple no longer contains living enzymes and may make acid reflux worse, so always eat freshly cut pineapple.

Interesting that it talks about Peppermint tea further down in the article, yet Peppermint tea shouldn't be taken if you have GERD.






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