13 replies to this topic

[chrissy778]

I wanted to share this in case anyone else is going through severe stomach pain like I was. When I was first diagnosed I took my Gleevec 400mg at bedtime in case I had side effects. Every night I would eat dinner and take it with a glass of water at bed time right before laying down, around 9 or so. Ok so maybe I did not always finish the water. I was diagnosed in Aug 2013 so by November 2013 I had a Cat scan of my left stomach area from pain that started there. Followed later by a ultrasound because yes pain was still there. I saw a gastro and had a endoscopy was put on Omezperol and then Sucralfate some kind of suspension for the stomach. But the pain was always there everyday causing anxiety and worry, wondering if the drs were missing something. I was always feeling for something that felt like a enlarged spleen lol My stomach hurt like someone digging it from the inside with their fingernail, always feeling full, uncomfortable and burping constantly. Then a week ago I changed my pill time gradually to 6pm right after dinner. After a few days the pain is gone. Yes completely. Could it really of been that simple. This time change worked for me so I just wanted to share. Thanks, Chrissy

[Billie Murawski]

I'm so glad you figured that out Chrissy.  Maybe moving around a bit after supper helped you digest the pill better. I take my Sprycel about 4:00 pm (that's the best time for me to fit it in with all my other meds) the odd part is if I take my S at a different time I get nauseated whether I have eaten or not. I guess it's trial and error with all of us. Thanks for sharing that.          Billie

[gerry]

I thought I read somewhere that you're not supposed to lie down straight after taking the Gleevec, can't remember where I saw that.

[gerry]

Was on a GIST site http://gistsupport.medshelf.org/Nausea

[Jerry.s]

So I been suffering with pretty bad with upset stomach and really bad acid reflux . After taking Ppi it helped a little bit not enough , I still felt a burning sensation feeling throat. I called my Onc and he finally told me he thought it was my potassuim pills messing me up not the gleevec . I stopped taking those on Tuesday and today I felt better than I have in a long time

[Frogiegirl]

Chrissy778 ummmm you are describing my situation to a T! I have that same pain, and had an ultrasound then and endoscope and then the lovely colonoscopy. they Diagnosed me with gastritous and esophagitous I know the spelling is all wrong. I am always feeling my left side to see if its my spleen as well. Its a horrible pain! if I lean to that side while riding in a car I can really feel it! I am on Tasigna and take it at 3pm and 3a.m. They recommended I start taking Prilosec but I'm to scared because of absorption issues with tasigna...and I'm sure other TKI's. for now I am drinking Kiffer when I feel pain and it seems to ease up. I'm so glad I'm not alone with this!  Thanks for sharing! I am always asking my doctor to check my spleen cause it hurts on that side!

[Trey]

Food certainly helps buffer the effects.  Water alone does not do the same thing.

[chrissy778]

Thank you Billie, Gerry and Trey. FrogieGirl, yes when I sit in the car so much worse. I was always imagining a tumor pressing into my stomach crowding it out. It caused a lot of overthinking and anxiety this is a huge relief. I was also diagnosed with Gastritis with the endoscopy. I think it was the pill eating away my stomach the whole night, I sleep on my left side also.

[Melanie]

Chrissy, so glad you shared this. We can't be afraid to try different times to take these TKI'S to help with side effects. It seems everyone has to find what works best for them. I had something similar with Bosulif, not your horrible pain, but nausea. Wanted to take it with breakfast to work it in better with other meds. Had horrible nausea ... the kind where you're praying to the porcelain idol all day. stuck it out for a week, but ended up going back to taking it with dinner. Immediate relief. Crazy!

[chrissy778]

mbrown2010 Who would of thought, glad you are feeling better... That is crazy

[Trey]

The Goddess of Porcelain and Thunder demands a sacrifice of the contents of both the stomach and bowels.  So give her the puking sharts, I say.  In your face, porcie.  'nuff said.

[Billie Murawski]

Now we have another word to add to our cml language Puking Sharts. Boy can I identify with that,from my Gleevac days.

I still have an occasional bout where I get the pukingsharts and have to see porcie.      Cool Trey

[chrissy778]

I had to read it a couple of times too funny. lol

[Melanie]

Too funny...sacrificing puking sharts to the porcie. 😜