20 replies to this topic

[Badger]

I'm using Sprycel and because I'm having pleural effusion issues, I'm taking diuretics.  This has been working semi-okay, but I believe the diuretics are causing my acid reflux to act up.  I know that taking most any product for acid reflux isn't recommended when using Sprycel.  My wife though suggested that I try using apple cider vinegar (after she saw Dr. Phil recommend it on his TV show).  My question however is, is the apple cider vinegar going to interfere with the Sprycel in the same way as the drugs for acid reflux do?  (I amost hope so, as that stuff tastes like crap )

[hannibellemo]

Hi, Badger,

Wish I were as stoical as you seem to be! I'm dealing with a PE and you can hear me whine and bitch all over this board! Unfortunately (since you hate it), the vinegar probably isn't much different than Tums. If you leave a 2 hour window before and after you take your drug before you drink the vinegar you'll be ok. I've also heard that is supposed to be helpful but I've never tried it.

How long have you had your PE, how large is it? Are you still taking your Sprycel? Same dose? Have you tried steroids, diuretics, etc? Sorry for the 3rd degree, but as much as you hear about Sprycel and PEs not that many of us actually seem to have experienced them.

In case you are interested here are the links to my whines, err, posts:

http://community.lls.org/thread/13471

http://community.lls.org/thread/13445

http://community.lls.org/thread/13502

http://community.lls.org/thread/13547

Sorry if this is more information than you wanted.

Pat

[Badger]

Pat,

I started on a dose of 100mg and immediately my breathing went south, at which point I had a chest xray.  My onc then took stopped my Sprycel for a couple weeks until I was feeling better, and then decreased my dose to 70mg.  After this I was feeling great until my next pcr went the wrong direction.  My onc switched me back to 100mg and my breathing went bad again.  I was using diuretics, but I felt like total garbage, so my dose was decreased to 70mg again.  This time (three months later), my pcr came back with a good result, but I still have to take the diuretics everyday or I can't breath worth a darn. 

I've always been reluctant use any kind of antacid; that's why the apple cider vinegar sounded like a good idea.  However, if it has the same affect as the antacids do on Sprycel, I'd likely not take anything.  Maybe I'll see if I can decrease to 50mg and get away with it.

[tranier]

Hi.  Ask your doctor if you can take/get prescription for Protonix..BJ was on Gleevec, then Sprycel, then Tasigna and is now 5 months post transplant.  Protonix is still the first pill he takes daily at 8 am.  He is on about 10 other RX now, but had been up to 30 and it was safe with all of them...and his acid reflux is defnitely controlled...he forgot once and never has again..a very tiny pill but it makes all the difference...Best of luck.

[hannibellemo]

Hi, tranier, unfortunately, protonix is also on the list of anti-acid drugs to be avoided if on Sprycel.   http://www.drugs.com/sprycel.html

Thanks, Badger for the PE info. I'll let you know what happens with me.

Pat

[Trey]

No interference issues.  Whether it will work is another story.  Try it and tell us.  If orally doesn't work, try aborally (kidding -- I like to use this word that Tedsey taught me, since it is a fun word to use at cocktail parties; for example: "That is a very fine idea; but first I would like to see you use it aborally as a demonstration of its effectiveness".)  Did I digress just then?  So sorry.  Aborally, aborally, aborally.

I keep calcium antacids on the night-stand and take them if I wake up and have acidic stomach.  They are fine as long as they are not taken within a couple hours of the TKI drug.  I do not take them aborally.

[hannibellemo]

You know, Trey, for some reason I think arborally should have something to do with trees. No wait, that's arboreal! I was having a hard time getting a visual with trees and arborally - painful!

Pat

[Tedsey]

Ouch!  Either way, what I envision is torturous.  Honored to impress the master with my vocabulary...  I know this sounds crazy, but I read that pickle juice may work (salty or sweet).  And, it is to be taken orally, by the way.

Teds

[Happycat]

The chemistry of this does not work. You are adding another acid to an acidic environment. Not helpful.

What might help is to buffer the acid in the stomach. If you find a recipe that uses the vinegar with baking soda, you will get sodium acetate. This will buffer the acid in the stomach, taking the pH from 2 up to 5, or thereabouts. The higher the pH, the less acidic. Lower pH is more corrosive, hence you'll feel more burn.

That said, you can get the same affect with alka seltzer. That fizzing is release of CO2, to give you a salt of sodium citrate. That will buffer the stomach pH to somewhere in the range of pH 4-5 or so.  You  likely can't do this with any of the TKIs, because they probably need more acid to help dissolve up the pill so the meds can be absorbed. Thus, would need to wait a few hours. Also, check before you take alka seltzer, since I think it may also contain aspirin.  It is used for hangover cures, after all. Gotta be something in there for headaches.

You can also just take some bicarbonate in your kitchen, as in baking soda. That would certainly buffer the stomach even more but I'd investigate first, since people don't normally take it. It will generate CO2 gas in your stomach, which is probably why they don't do it. Might be uncomfortable.

Any of these buffered recipes will also add sodium to your diet, so need to be careful there, especially if you have PE and taking diuretics for it. Will likely increase your water retention, unless the diuretic can overcome that.

Traci

[Marnie]

If you take the vinegar and baking soda aborally you might have some very interesting results.  Add in some orange food coloring for the famous volcano effect

[Tedsey]

I was actually kidding about the pickle juice.  Sounds like it would be the absolute worst thing you could take.  But it was in a Dr advice column where a patient said it worked.  And the doc seemed neutral.  Whatever...  Marnie, I like your suggestion, but I think it has too far to go to reach the stomach before the blow out. 

[PhilB]

So how exactly would vingear and baking soda taken aborally differ from my normal mornings in Glivec land?

[Marnie]

O.k.  you want different??  Try it with green food coloring instead

[Trey]

Then instead of the "Oh Sharts!" it would be the "O'Sharts".  Just O'Sayin'

[pammartin]

Trey I believe this is the first post I have read from you that contains more than an inkling of humor.  I am impressed, it is almost lacking the dryness I have come to enjoy,  quite refreshing.

[pammartin]

Marnie,

As a teacher, I suspect you have had to experience one too many student created volcanoes in your career.  We had one here, and the eruption was strong enough it destroyed the project, so I had to stay up all night to build another so the boy had something to take to school.  Note; even the best made volcanoes will not withstand a strategically places M-80 fire work for special effects.

[pammartin]

Billie, the mind wanders and wanders at the possibilities of your suggestion.

[Marnie]

I'll bet that was an exciting night in your kitchen!!

I have an explosion story that may match it.  This one occurred, however, in the Canadian wilderness. . .long story, that one. . .husband and I stranded without maps or communication and one meal of chicken curry for 8. . .weather kept the other people and canoes from being able to fly in for days. . .the explosion part of the story involved some blood and wilderness first aid.  Luckily, the blood belonged to someone else (and was caused by his own . . .shall we say. . .stupidity).  Never shoot off bear-bangers that have been tampered with. . .