29 replies to this topic

[LivingWellWithCML]

Hi,

I have basically ignored the annoying GI issues since starting Gleevec 400mg 2-1/2 years ago, but my stomach continues to act up and grumble away, and I have been trying to put on a little bit of weight, but with no avail.  I think all three are related and stem back to Gleevec being hard on my gut.  I have responded well, though, and don't want to change TKIs.

What are the latest remedies that are helping others?  I take Gleevec with a decent amount of breakfast food in the mornings to try and deal with it, but I get a weird stomach grumbling and gas throughout the day and in the evenings.  It would be great to manage this side effect and actually put on a few pounds too, cause I could use it.

Thanks for your help!

[SunNsand]

My gut-saver is probiotics. I didn't believe my Onc in the beginning, but I'm a believer now.

[GerryL]

Hi Dan,

I take a probiotic plus I take psyllium husk - still get a bit of a gurgling stomach, caffeine/coffee seems to give me more gas. But I still have coffee from a coffee shop.

I still feel like I've swallowed Snap, Crackle and Pop from Kellogg's Rice Bubbles on occasion, but thinking back, I suffer more when I buy a coffee than when I use my coffee machine at home and make my own on the weekend.

[August1]

Hi,

I had a bunch of GI issues after being on Gleevac for one year. I also started losing weight and couldn't seem to put the weight back on. I've always been pretty active and am 43 years old.

For my part went to see a GI doctor to be safe (all tests normal but showed mild inflammation). Since that time I've added probiotics, Calcium, Magnesium, and B12 to my diet and the issues have cleared up a lot. I've also put 5 pounds back on which is good. Finally, my Onc.suggest I try Sprycel 100 mg and I seem to be responding well to that.

I think it's fair to say that these TKIs can impact the good bacteria in our stomach and intestine. I think probiotics can go a long way in helping manage this.

One thing that is recommended is to take your Gleevac after dinner and a couple of hours before bed (laying down) so you don't feel the side effects so much during the day.  I did also notice that certain things such as alcohol, caffeine, and fatty foods would affect me a lot more while on Gleevac so in some cases diet may affect this as well.

I hope this helps.

Take care and best wishes,

Bill

[TeddyB]

Hey Dan, i have had a few issues with my stomach lately myself, i think one of the reasons i had trouble is that there is more iron in the 4x100mg tabs than in the 400mg tab, so i am taking off just a tiny tiny bit of the coating before i swallow them, and it has helped with my dhiarrea, but if i am correct, you are on one 400mg tablet, so that probably wont help you in any way, BUT, i had to cut down on the red wine, as my stomach doesnt like it very much any more, the times i drink red wine i get a bit nauseated and i get GI issues the next day, at least if i have more than one glass. So what do i do? Rosé wine! Stomach seems to like that a lot more than red wine. I only drink red wine on the days i know i have nothing special planned the next day.

I have one other tip, but you are probably not going to like it, but disolving gleevec in water and drinking it was good for my tummy, i did that the first 6 months of my treatment, and when i did, i could eat or drink whatever i wanted without any problems. The downside is it tasted like crap, and it took almost 30 minutes to disolve, but i got used to it

[LivingWellWithCML]

Thank you everyone - this is so very helpful!

@Bill - Sounds like we have a similar situation re: weight.  I lost a lot of weight over the first 6 months on Gleevec, and I haven't been able to put much back on at all.  I road bike over 100 miles/week and burn a boatload of calories, but I can tell that my lack of weight gain is not due to caloric output.  I'm really glad that Sprycel is working out for you.  So, if probiotics and the supplements you mentioned were helping, then what ultimately drove the change to Sprycel?  Were you still having GI inflammation?  Just wondering.

@TeddyB - Thanks.  Man, I can't give up the red wine .... ugh!!  The dissolving technique - I've read about that a little bit, but does it potentially impact the level of Gleevec absorption into the bloodstream?  I would be perfectly happy trying it and waiting the 30 minutes+, but I am really concerned that it would reduce absorption.  re: red wine, I don't get any nausea with Gleevec, so I've been lucky there.

Also for folks, I drink ~ 2 cups of coffee in the early AM, then Gleevec w/ breakfast not too long after w/ a big glass of water (usually with oatmeal, but sometimes with banana and cereal), then usually have some wine around dinnertime ... but nothing excessive.  Guess I might have to consider changing some of that .... ?

[CML2012]

I had acid reflux before CML. Also 12 years before CML I lost my gall bladder. So I have several stomach issues. I take the Gleevec after dinner every night and that really helps. I also try a small amount of cheese every few days and that helps me to. I take Prilosec for my acid reflux. It does not interfere with the Gleevec but will interfere with the other TKIs. I am like you and have done well with Gleevec and definitely do not want to change. Good luck.

[LivingWellWithCML]

Gerry -- Hi, and thanks!  What time of day do you usually take Gleevec, and what time of day do you usually take your probiotic?  Any specific brand(s) of probiotic that you might recommend?

[August1]

Hi Dan,

I decided to try Sprycel mainly to see if overall side effects would be better. This included the GI issues and fatigue which was pretty significant for me in the past.

When I first started on Gleevac. I would allow myself to drink in moderation during the week (1- 2/day) and would have sometimes 3-4 drinks (or more on rare occasion) on weekends. While I responded well to Gleevac (normal CBC, CMP, LDH, etc.) after 9 months I was still PCR 5% (OK, but not ideal). After this I cut back to very little or no alcohol (<1 glass/day), limiting caffeine (1 cup/day) and fatty foods (cut out all processed foods), eating proteins, fruits, and vegetables. I really can't say that this made a difference "medically" but 3 months later my PCR was < 1%.

During this time though I was still having the GI issues and I had lost more weight than I would have expected (I am 6' tall and dropped from about 190 in January to 170 in August.) I was still within "normal" BMI for my height but I had not been this weight since prior to my original diagnosis. So I got concerned about malabsorption and followed up with my Onc. My blood work still looked great so he suggested going off of Gleevac for a trial period and potentially trying Sprycel to see if things improved. Just to be safe, I also followed up with a GI doc who did upper and lower GI endoscopy and a CT scan. Endo showed some mild inflammation, nothing serious, and CT scan came back normal. I have a follow up in about a month.

Following the "flush out" for the lower GI I started on the probiotics, etc. and the issues cleared up a lot. Since then I've also put about 6 pounds back on. It's pretty apparent that alcohol, caffeine, and diet can also increase the GI issues. I think over time, in combination with any TKI, this "might" impact good v. bad bacteria in the gut. I'd check with your doc and the supplements might be a good first step.

Bill

[LivingWellWithCML]

Thanks Bill - this is incredibly helpful!  I am 6'1" and was 175lb at diagnosis, but over the first 5 - 6 months on Gleevec 400mg, by weight dropped as low as 147lb.  It was pretty scary, but I was also running daily (and faster/further as Gleevec started working), so I'm sure that was a contributing factor to the weight loss as well - but I suspect that my situation is similar to yours.  I have settled in between 150 - 154lb, which is normal but on the low end of BMI.  My wife believes I need to put on some weight given that I eat a ton of food daily - so there probably is some malabsorption going on.  Mind if I ask just a few more questions?

• What brand of probiotics do you take/recommend?  When do you take it relative to your Sprycel (at the same time, or X hours before/after, or a certain time of day)?
• What are your primary sources of protein in your diet?

Thanks for your help!

[August1]

Hi Dan,

Glad to help. I am not an expert but I take Probiotic 15-35 from VitaCost (online). I take my TKI at night after dinner, usually around 8 pm, and all supplements and vitamins in the morning with breakfast around 7 am. 

My diet proteins are mainly chicken and fish, and a little red meat here and there. I try to get a lot of fruits and vegetables as well and keep gluten, fatty, and processed foods to a minimum.

I hope this works out for you!

Bill

[LivingWellWithCML]

Terrific, thank you!  Yes, I am going to try a few things based on your experience.  It's always helpful to learn from other patients and what's working for them.  I really enjoy some red wine in the evenings with dinner, and I hope I don't have to cut out that routine.  I'm going to try switching my G dose to after dinner and start taking probiotics with breakfast, and change from 2 cups to 1 cup of coffee in the early AM.  We'll see how that goes as a starting point.

[TeddyB]

Dan, i hope you get these issues sorted.

I was worried about the absorption issue myself.

Check Trey`s answer here: http://community.lls.org/thread/16511

Also, i did get quick to 0.1% (6months) while drinking Gleevec, i didnt ask my oncs permission for this, i read the "instructions" for gleevec and read that i could disolve it, so i did.

If i were you, id only try this as a last resort, try the other stuff first

Teddy

[LivingWellWithCML]

Teddy,

I decided to try it today, just to see what it tasted like.  I'm transitioning from breakfast-dose to dinner-dose over a few days, so I waited until noon to dissolve and "drink" Gleevec 400mg with a lunch sandwich.  It looks remarkably similar to a delicious glass of fresh-squeezed lemonade, but with a strong aftertaste of metal and dirt.  In short, yuck!!

[TeddyB]

Cheers

Yeah , it tastes like something ive never tasted before, hehe, soap blended with metal or something, ugh, but i got used to the taste within a few weeks, the trick is to take a few deep breathes before drinking and then just take it like a shot, all at once, and then use a Ritz cracker or something to get the worst taste out after. How is your stomach after you drank it? Nice bike by the way.

[LivingWellWithCML]

Yup, I pounded it like a shot and in one breath.  Stomach feels pretty good ... and the first probiotic bottle has been ordered and should be here next week.  Hopefully these changes/additions will make a difference.

Love the bike, BTW - bought it in February, started biking in March, and I'm really enjoying it -- it's a fantastic workout.  Taking it out for a ride right now actually.

[pamsouth]

Cml, 

I started on Gleevec 2005.  Had my gall bladder out in 2007.  Surgeon said it looked like a perfectly good gall bladder.  According to one of the test the bile duct tube did not open and shut correctly or just plain didn't work.  I had been sick for almost two  years after starting gleevec and thought it was the CML/GLEEVEC, sick as it vomiting and low grade fever.  Now why did I lose what looked like a perfectly good gall bladder.  can only guess.  As my GFR Kidney filteration is now a stage 3, yep filter tubes are damaged, losing some of my vitimins in the waste and kidneys not make what they need to.  My thought would be the diurectics and blood pressure med's I I started taking in 1997.  Two cardio docs told me  not to take the diurectics (at least not everyday) unless I had swelling of the feet/angles as the diruetics would ruin my kidneys, dyhadrate them, as well as dyhdrate my other organs.  That is another reason I try to keep my GI  track good without laxaitives. because laxaitives will through off your electrolytes too and dyhdrate your kidneys.  Water, exercise, veggies is the way to go and lose unwated weight.   Wish I had not listented to my primary doctors, as the diurectics were giving to me as a blook pressure pill, not for fluids.  To late for the gall bladder and the gall bladder does have a purpose as all organs do!!  But at least I can slow down my kidney failure.  I went to a kidney doctor on my own, did need a referral, and yes they do take stage 3.  Since I lost weight I don't take a blood pressure or a diurectic.  But I do have to take Vit D as my kidneys no longer make the vit D, also have to take vit B12 shots.  Have a new primary doctor and in a couple of weeks we will run a whole new set of labs to see what other minerals and vitimins i am defecient in.  Will my kidney filters repair themselves, I doubt it!!  The only thing I take is the Gleevec, 2 mg of Lorazepam to help me sleep, the Vit D and Vit b12.  Yep I got to take the Gleevec, but hopefully get rid of some the other pills, less on my liver and kidneys.

PamSouth

[GerryL]

Hi Dan,

I take my Gleevec in the morning, the evening dose gave me issues with fluid retention in the throat tissues and I would wake up at night feeling like I was choking due to the swelling.

I take Inner Health Plus probiotics - but any of the ones available from a fridge should be okay.

Good luck with the transitioning to night time.

[Pin]

Hey Dan! As you know, I have had so many GI problems with Gleevec - ugh.

I started feeling better after I took that combination of herbal medication and probiotics - the problem was my results were unsteady during that time, and for about 3 months after I stopped the probiotics too. My theory is that it sped everything through my digestive system too quickly and potentially at a time when I was sensitive to disruptions in Gleevec dosage. After I stopped taking the probiotics, my digestion remained the same for about 3 months, and then finally started getting back to what it was pre-herbs/probiotics (e.g., lower abdominal pain came back, constipation came back). At the same time, my results eventually went back down. Could have been a coincidence though, I recognise that. But something is telling me that perhaps I was simply getting rid of the Gleevec too quickly (or even the change in gut bacteria was not as facilitative). Anyway, just my experience.

What has helped me enormously with nausea is taking my Gleevec several hours after dinner (usually 2-3 hours), sometimes with a small snack if I'm hungry. I found that if I took it with breakfast I would get nausea around 50% of the time, with dinner I would get it if I had a fatty/rich (or flavoursome) dinner, or was quite full, but now I only ever get nausea if I have it too close to dinner. I have no idea why this works for me as it seems to go against recommendations, but it does.

As to gaining weight - I can put on a couple of pounds of fluid retention just by eating a salty meal Seriously though, I would be eating lots of protein (fish, eggs, milk, cheese, nuts), full-fat everything (especially milk). If you're happy to just put on a bit of extra fat, some quality chocolate never goes astray either! Also, this may sound weird, but sometimes I think I burn up a lot of extra energy by being anxious/stressed all the time - perhaps some meditation or something like that to reduce the amount of calories you might be burning unintentionally!

Anyway, just wondering how are your latest results as well? Hoping they are good

[LivingWellWithCML]

Gerry - Thanks!  Do you take your probiotic at the same time as your morning Gleevec dose, or another time?