29 replies to this topic

[LivingWellWithCML]

Pin,

Thanks - very helpful!  Glad to hear you're doing well too.   The funny thing is that I don't get any nausea at all.  My symptoms are low body weight, some nasty bouts of gas and other "sharts-related" nastiness, and sometimes just a little bit of an ache in my gut (kinda higher, maybe near my stomach?).  And fortunately, I feel like my anxiety about CML is at an all-time low, and my stress level is down too - whew.  I'm also in some of the best shape of my life with all of the biking I do - it's really pretty amazing to think that this one little daily pill has made it all possible.

My last PCR was in April and my next one is in October, so I've been on a pretty long testing-break.  It's not stressing me out that much though, because I can't control it.

[GerryL]

Hi Dan,

I only take vit C and an iron tablet around the time of my Gleevec, the rest I take in the evening, not sure that it matters that much with the probiotic.

Welcome to the world of six monthly testing - though I do get a little antsy close to the test.

[LivingWellWithCML]

Thanks Gerry ... yes, apparently I do too.   I give my blood draw in 3 weeks and I hope that it was okay to move to this longer regimen.  My onc was very confident at my 2-year appointment, even though my PCR was only 0.08% IS.  I have to admit that I've enjoyed living my life and not having to visit a cancer center since April!

[Jerry.s]

Does watering it down really help the old gut ? I ve tried a few thing and nothing helps except for Prilosec . I am worried that it will dilute the Gleevec but my gut is constantly reminding me with high stomach pain and crazy noises . I was doing good for a while but coffee brought back acid reflux and this constant swolling in the back of my throut , I am not sure if it's from allergies or sinus or gi issues . If the diluting really help please let me know . I don't want to develop GERD or stomach cancer .

[TeddyB]

Does watering it down really help the old gut ? I ve tried a few thing and nothing helps except for Prilosec . I am worried that it will dilute the Gleevec but my gut is constantly reminding me with high stomach pain and crazy noises . I was doing good for a while but coffee brought back acid reflux and this constant swolling in the back of my throut , I am not sure if it's from allergies or sinus or gi issues . If the diluting really help please let me know . I don't want to develop GERD or stomach cancer .

 

Well, i never had any stomach issues when i disolved my G in water, except that i was a bit constipated from time to time. It might be worth a try, but it tastes nasty. If you decide to try it, read the packaging leaflet, it says how much water you should use (0,5dl pr 100mg if i remember correctly). Oh, and remember to get everything disolved before you drink it

 

It would take some nasty stomach issues for me to go back to drinking it, as it took a lot time and effort as opposed to just swallowing the pills.

[jmoorhou]

Dan, we all get such different instructions from Oncology departments.  I was given a paper that said to take Gleevec right after dinner with "plenty of water".  So I was drinking a large glass and half of water, I cut down on the water because more was causing more stomach "tightness".  

 

The instructions also said alcohol only "on occasion", I went through a very stressful time and was drinking wine, which caused a lot more GI issues.  The wine might be causing your problems.  Now when I really want some wine I take a little bit of Lorazapam to calm down.

 

I also have various aches in organs in upper abdomen, Trey mentioned that the pancreas also gets involved and needs time to settle down.  I know I was having pain on the upper right and left sides, but it went away.

[snowbear]

How bad are the GI issues with Gleevec?   I will be starting the Gleevec soon and am nervous as my GI tract is a train wreck to start with from autoimmune disease and the meds used to treat those problems (mainly methotrexate and prednisone).    I currently take Dexilant 60 mg & Zantac 300 mg for reflux, Linzess 290 mg for IBS-C, Reglan when needed for gastroparesis, Carafate for stomach pain, Bentyl as needed for spasms...and on and on it goes.

 

In the past two years, I've been hospitalized for 3 instances of ileus, one with megacolon and I'm darn lucky I didn't lose it that night. 

 

Doc recently started me on Cymbalta which is causing more nausea.  I don't know if I can handle another medication with GI side effects....but the Gleevec is mandatory.  I have to take it, come hell or high water. 

[jmoorhou]

Snowbear, you might want to see if you can go without the Bentyl, one of the side effects is rashes, and that is also a somewhat rare side effect of gleevec, I was taking both, got a rash on my face, and had to go to the ER, I stopped taking the Bentyl and started with probiotics and haven't had a rash since.

[snowbear]

I don't take Bentyl every day.....only when I have bad spasms.  I get them in my bile ducts (gallbladder was removed), docs think in the sphincters go to and/or leaving the stomach and intestines.  It's kept me out of the ER many times.

 

I'm going to start taking probiotics again before starting the Gleevec.  I don't know if  it will help, but it certainly won't hurt.

[jmoorhou]

Dan, I think night time is the way to go.  I asked the Oncologist about drinking, she said they only reason I'm not supposed to drink with Gleevec is it could cause anemia....just what you wanted to hear...but if your labs are ok you're probably ok with the red wine.

 

I have maintained my weight and even gained about 7 pounds after Gleevec stopped the leukemia I was PRCu but now the doc is seeing something.

 

I gained weight by making kefir smoothies, kefir is the best probiotic there is, I would put bananas, all the berries fresh ginger, milk, and a cup of kefir, maybe one of these a day would help you gain, also grind up nuts they are high in calories.

 

Another thing I wanted to say it I was taking 300 mg Gleevec and noticed there were less side effects with the one 400 mg pill.