13 replies to this topic

[cometbro]

So this reflux from hell is getting out of hand.  Just could not sleep last night.  Not only was the burning sensation in my throat, but all over my chest now (never felt that one).

I will not take my Tasigna untl I see my doc.  I will give them a call tomorrow since they are closed today.

What do you guys think of this decision.  It should be fine, since I'm in MMR, right?

[Note: i've been taking Omeprazole 40mg 2x daily and Zantac 150mg right before going to bed.  I've raised the head of the bed like a foot and a half.  Has not worked.  Also, NEVER had any reflux issues before taking Tasigna.]

Thanks.

[jwbwater]

Never had this problem myself, but I hear that drinking water with baking soda in it can help, along with trying to sleep upright which it sounds like you're already trying.

Hope you find a solution whatever it is.

[hannibellemo]

Cometbro,

If I were you I'd be talking to my doctor about switching back to Gleevec or on to Sprycel. Taking the medications you need to control your reflux (which don't seem to be working) may also reduce the effectiveness of your TKI.

Don't remember if you said why you were on Gleevec for such a short period of time. I have reflux but I had it pre-CML, I'm surviving without anything other than Tums when I need it. I'm on Sprycel, btw. I control it by eating my last meal of the day no later than 6:00 if at all possible and I sleep on a wedge. I also watch what I eat and I try not to have to many triggers together at one time. My onc did give me a pill to take as a barrier, sucralfate 1 mg tablet, but it kind of grosses me out so I don't take it much.

I took Prilosec and Gleevec together, don't know if the two made my liver toxicity from Gleevec worse, but when that cropped up I was immediately taken off both, they can both be hard on the liver. I don't think Gleevec action is affected by the antacids as much as Sprycel and Tasigna so perhaps you can go back.

Good luck!

Pat

[Susan61]

Hi:  I know how bad that reflux can be.  I started to get it after I was on Gleevec for awhile, and at that time I did not know it was the Gleevec causing it.

My doctor put me on Nexium 40mg a day, and it cleared it right up for me.  I have asked about switching to a cheaper form like Prilosec etc., and was told the Nexium is much better for the problem.  I have been taking the Nexium now for quite a few years, and have had no problem with it interfering with my Gleevec or any of my other medications.

    I would ask about the Nexium, and do not let that GERD problem continue or you will end up having trouble with the Esophagus.

    This worked for me, nothing else helped.  You will have to see what you can take  with the Tasigna, but ask your doctor as soon as you can.

[cometbro]

So I had a Barium Swallow exam today and here are the results:

There is a massive gastroesophageal reflux to the thoracic inlet.  There are many small mucosal erosions and enlarged mucosal folds.  There is impaired emptying without tertiary contractions, consistent with moderate dysmotility.  There is a small, spontaneously reducible hiatal hernia.

So there you have it.  I'm off the Tasigna.  It has really done a number on me.  I will be off it for 2 weeks before I start Sprycel for the first time (can't wait for those side effects).

The doc questioned me whether I had reflux before the Tasigna and I told him, never.  I used to eat whatever I want, whenever I want.  Right now I guess I gotta eat soft foods.  On top of this I think I have a stomach flu or some food poisoning.  Since yesterday I've been having watery diarrhea (or just water basically).  Not to mention I've become very fatigued with viral like symtoms.  I feel a little bit better than this morning, so it definitely feels like its passing.  The diarrhea continues and stomach cramping.

Now i'm scared looking forward to Sprycel, i don't want more side effects !

[Susan61]

Hi:  Glad you got tested.  I did not do the Barium Swallow, but I did get a Endoscopy when I had the GERD problem. Prior to having the Endoscopy I had seen a ENT doctor who put me on the Nexium.  I forgot all about that.  I had seen the ENT because I did not know it was related to the Gleevec at the time.

When I finally had the Endoscopy, they could see all the erosions were already healing up from me being on the Nexium.

     Hope you start feeling better with this virus or whatever your having right now.  I know when I get like that, I feel like Now What?

    You should be able to get on track now, and continue with the Sprycel.  Let us know how you do with the Sprycel.

Take Care

[dee145]

I have always had acid reflux even before diag, I take Gleevec and for years I was on either prilosec or prevacid i forget but was swithced to one called Aciphex.  I think it might be new.  i take in the morning cause I take Gleevec at supper.  Just my two cents!!!!

                                          Dee

[Trey]

This is why Tasigna dosage instructions prohibiting any food at all is a dumb idea.

[sferrazza]

Hi,

I sometimes take it upon myself not to take my meds, especially if we're going out for a late dinner etc.  I haven't had issues with my blood work and I don't do it a lot.  Sometimes I just need a break from the headaches!  I didn't know that tasigna causes reflux.  I have had reflux in the past but haven't had issues in a while.  For about 2 months now every time I work out or even run up the stairs or down the driveway I get severe pains across my chest.  I only happens when I exert myself.  Could that be reflux? Or am I having heart issues do to the drug?  Anyone have a clue out there in CML world?

Thanks

Susan

[Susan61]

Hi:  I have reflux, but have not had any chest pain with it.  You are saying severe chest pain on exertion.  I would just go get it checked out to be sure its not your heart.  I was having some stomach issues, and it would give me pain in the chest area sometimes.  They were ready to send me for a Gallbladder Ultrasound, and I did get a Cardiac Work-up.  I have Mitral Valve Prolapse, but have had it for years.  They did not see anything else on the testing, and for some reason the pain subsided.  These TKI's do their job, but  we could have other issues from them.  Just for your peace of mind if nothing else I would get it checked.

Susan 61

[cometbro]

Thank all for the responses.  They all have helped!

Jim, once I finally get an appointment with a Gastroenterologist I will ask about water with baking soda.  Something has to help, right?  Thanks for the well wishes.

Pat, I didn't know what a wedge was until I googled it after you mentioned it.  Any specific bed wedge you recommend?  I'm trying to buy one soon but there are a lot of options, expensive and cheap.  I'm leaning towards a 12" wedge for the highest elevation.  (Like Billie says, I'll sleep with my head on my knees, lol)

Billie, the "T" as you say seems to have been bad for me and i will be off to your side of the world (Sprycel).  Can't wait to see how this one will try to beat me up.

Susan61, I'm getting better with the stomach virus or whatever it is as the hours go by, thanks.

I really hope the damage to my esophagus and stomach is reversible. I just emailed my doc about him trying to get Nexium approved now that we all know that the Omeprazole hasn't been doing crap these last 2 months.  I can't believe Tasigna beat me up so badly inside.

Dee, I think that Aciphex could be one of those new PPIs that might be stronger than Nexium (as the doc who was giving me the barium swallow exam suggested is an option since the Omeprazole isn't working)

Trey, i've always had that in the back of my mind that taking the Tasigna without food could be burning up my insides.  I mean, every time I would put it in my mouth before putting water in my mouth to swallow it, I could sense how "strong" it tasted.  It tasted like pure "chemotherapy" or something that would burn my insides once those capsules went down to my stomach.  And being without food for a MINIMUM of 3 hours???

Susan(sferrazza), reflux can definitely be a side effect but you should definitely get it checked out as soon as you can like Billie always says.  You don't want it to get worse if its something serious.

Thanks again all.  I think the only good thing i'm looking forward to with Sprycel is being able to take it whenever I want and WITH food.  I'll also have to check with the doc about acid reflux meds in use with Sprycel.