29 replies to this topic

[Pin]

Hey all,

I'm 11 months into treatment (on Gleevec 400mg). Lately I've been having some real trouble with side effects, mostly GI issues (worst is hideous pain in stomach) and fatigue - it's an old problem, I know!

From previous discussions on the board, I've learned that some people have changed the timing of their dose (i.e., from morning to night) or split their dose (i.e., 200mg both morning and night). I'm considering switching the timing of my dose first (from breakfast to dinner), and then if that doesn't help, asking my dr if I can split the dose.

Can anyone share their experience with changing the timing of their dose? Or dose splitting?

I'm really interested in what you changed, which side effects you had, and which ones you felt improved with the change.

Thanks!

Pin xxx.

[Marnie]

Hi, Pin. . .

I'm not on Gleevec any more, but when I was on 400 mg, I played around with dose splitting and with changing dose time.  Splitting the dose (200 a.m. and 200 p.m.) didn't do anything significant for me, except made it harder to remember to take the pill.  For me, evening dose of 400 mg worked the best for GI issues.  For me, it was a big issue because, as a teacher, I can't just leave my classroom when I need a quick run to the bathroom.  At home in the evening was far more convenient.  Also, sometimes after taking my Gleevec, I would have awful nausea/g.i.  , though that didn't happen a lot.  Usually it was an hour or so of discomfort.  7:00 p.m worked best for me, because the effects usually hit about 2 hours later, and by that time, I could deal with it and then go to bed. 

With Sprycel, I take my pill at 7:00, but after I retire, I'll switch to morning, because my side effects are a little different.  Too much information here, but Sprycel gives me bad gas, and that's not a side effect that I want to show up when I'm teaching my middle school students.  Now, I get g.i. cramping and gas in bed.  I'd rather deal with it in the morning, thus the retirement plan.

Because the halflife of Gleevec is so long, my onc was not at all concerned about switching does time, however, I did the change in hour increments until I worked it to the time I wanted. 

Good luck!

Marnie

[GerryL]

Hi Pin,

Are you taking Probiotics? I've also found that coffee can set me off (if I'm not buying from my usual shop where I know it is okay) it can give me gas pain. Try keeping an eye on your diet to see if there is anything in particular that sets it off. I can't eat anything that is too oily nowadays.

I have also found some of my side effects have gotten slightly worse in the last six months. Try moving the timing of your dose to night time - can't make it any worse.

[LivingWellWithCML]

Hey Pin,

So, GI issues have been a recurring theme for me off/on over the first year of Gleevec 400mg - and I've been convinced that it's a side effect of the TKI.  I tried the dose splitting / dosing schedule changes for a bit and it didn't help.  I know this sounds strange, but (as you know from our other thread) now that I've started to directly treat some of the extreme stress/anxiety challenges, I've found that the GI issues have vanished -- even though I resumed my normal TKI dosing schedule (Gleevec 400mg w/ breakfast).  Note that every person is different - but for me, GI issues don't appear to be a TKI side effect, but the anxiety associated with "living with CML" caused GI issues which made me think it was a TKI side effect.  I wonder if this is the root cause for other CMLers?

I continue to fight the fatigue through rigorous fitness, but it's tough cause I travel a lot for work, so I don't always get the morning run/swim that I feel I need to mask the fatigue during the day.  But that's my recommendation ... I find that the less I exercise, the more I feel the fatigue.  The more I exercise, the less I feel it (a strange pattern indeed).

[Pin]

Thanks Marnie, Gerry and Dan

From the feedback received, it may not make much difference for me switching times or splitting. My pain comes and goes, so maybe I just have to put up with it!

I have been monitoring my diet to see if anything makes it worse or better (onion and garlic seem to be the worst offenders, potentially eggplant too) and I did take probiotics for about 2 weeks but didn't notice much improvement but sometimes I get it for no discernable reason - thinking it may be along the lines of what Dan is saying...Dan - I don't think it sounds strange at all - it's a problem I've had as long as I can remember (I used to notice it most when I had a big dinner to go to, like a ball or a wedding - I found them stressful, plus a fancy (usually uncomfortable) outfit and I just couldn't work out why every time I would be doubled over in pain before the entrees even arrived - nothing to do with food, or maybe I was just hungry? That happens sometimes too, I get it when I don't eat regularly enough). The problem is just significantly more pronounced on the Gleevec, so I am looking for other possible reasons as well.

[GerryL]

Hi Pin,

Try taking the probiotics for longer than 2 weeks - give it a couple of months. Dan's right, stress can give you IBS.

[0vercast]

I realized right off the bat that I was going to have to take my 400mg of Gleevec in the late evening, after dinner and before bedtime.  I get a little wave of fatigue and some minor stomach cramps about an hour after taking it.  The cramps last only a few minutes and feel like gas pains.  The little bit of fatigue actually helps put me to sleep.  If I have an early dinner and end up taking the pill more than 3 or 4 hours after dinner, I'll munch or a few saltines, a graham cracker, a snack apple, or a half turkey sandwich to ease the impact on my stomach a little.  Try taking it right before bed with a light snack, you might not feel a thing.

[Susan61]

HI:  I always try to be of help to others, but this topic really hit home for me today.  I have been on Gleevec 400mg.for 11 years, and I have gotten nausea on and off.  I especially get it when I do not eat a full meal with it.  Now since May 7th I have been so sick with nausea, and one night of vomiting.  No pain of any kind, but now Diarrhea on and off.

I feel good for a day, and then I am so sick the next day.  Do not even want to go anywhere when I get these flare-ups.

The thing that caught my attention was the word stress.  I have been questioning the stress versus the pill.  I thought maybe even Gallbladder, but everyone is telling me they do not think so because there is no pain.  I am thinking I picked-up some type of parasite because this extreme nausea just came on all of a sudden.  I am very fatigued also.  If I fall asleep I am fine with no nausea, but then as soon as I wake-up and sit up the nausea starts again.

I am getting relief with Tea and Ginger Ale.  I question IBS etc.  I just do not know what to do for relief. I do find onions bother me very bad also, and never did before.

    We have a tendency to blame our TKI drugs for everything, and I just wonder if it is my Gleevec after such a long period of being on it.  We have discussed me cutting back to 200mg due to my low platelet count etc.

   I hate to go see another doctor right now and be put through all kinds of testing.  I am sick of doctors and pills.

   If this continues, I might have to go see my Gastro Guy who will want a EGD and a Colonoscopy etc. etc.

   I hope we all get some relief from whatever ails us.  There has to be a simple answer I hope.

[pamsouth]

Hi Susan, 

Sorry to steal this thread but i couldn't help pick up on your comment about the "nausea on and off".  Maybe it will be some food for thought to PIN, and whoever else with GI problems, I don't know.

I went on Gleevec in 2005 and had my Gall Bladder removed in May 2007.  I had experienced NO pain as I didn't have any gall stones, but my gall bladder had quit working properly.  Like you I had been having issue with nausea and vomiting from when I started taking Gleevec in 2005 and as you can see well into 2007.  I would vomit and get a slight fever, call my onc, and she would send me to the hospital.  Well one day I had went for my annual check up to my primary doctor and had been up all night vomiting.  The doctor said Pam I think it is you Gall Bladder.  I had three different test done, the first two did not show gallstones, the 3rd test took 2 1/2 hours (no gallstones).  The last half hour of the test the tech said "she was going to inject something into my IV and if got sick, that meant that my gall bladder wasn't working, and yes I did get sick.  I forget how the gall bladder works, there is a bile duct tube going from the gall bladder that empties into intestines, well evidently the bile was not passing from one place to another.  Sorry I will have to google gall bladder and how the bile empties, I have slept since then.   Anyhow the surgeon said my gall bladder looked perfectly normal but then the test showed it wasn't opening up correctly from the tube.  Anyhow I didn't have anymore of the attacks so I am sure it had something to do with the gall bladder not working, but NO pain and no stones, perfectly normal looking gall bladder.

I do sometimes wonder if the Gleevec was toxic to my gall bladder.  In fact my primary doctor had mentioned that " Pam I think it may be your gall bladder, you take Gleevec" I guess I will never know.  All drugs and chemical have toxicity, but guess we don't have much of a choice there.  You know how the doctor is always punching around the spleen area, well I was thinking the gall bladder is somewhere in that area.

Anyhow just thought I might chime in and say check out your gall bladder, remember I took 3 different test, but they decided it was my gall bladder and I didn't have stones.

Ah here is a good picture of the gall bladder and bile duct.

http://www.webmd.com...the-gallbladder

"In response to signals, the gallbladder squeezes stored bile into the small intestine through a series of tubes called ducts. Bile helps digest fats, but the gallbladder itself is not essential. Removing the gallbladder in an otherwise healthy individual typically causes no observable problems with health or digestion yet there may be a small risk of diarrhea and fat malabsorption."

PamSouth

[Pin]

Hi all, thanks for your kind words

Gerry - that sounds like a good plan - the hardest thing is that sometimes I don't get it at all (like the past few days!). I've also added in some soluble fibre supplements to see if that helps too.

0vercast - thanks, I am still considering switching to night time, my main concern is that I change my dinner time from night to night depending on what I have on after work, and I need a large meal to eat with it or I get pretty bad nausea.

Susan - I am worried about you, I hope that you can work out what is causing you this awful nausea, it's so horrible to have to deal with. I hope to hear more from you about whether you will attempt a dose reduction, maybe that will give you some relief and help with your platelets as well.

PamSouth - thanks for sharing your story about your gall bladder - I never even knew what the gall bladder did before, interesting that we can have it removed with little problems (kind of like the appendix).

Cheers,

Pin xxx.

[pamsouth]

Yea Pin,

I don't miss my gall bladder at all.  Strange thing about the gall bladder I always thought the problem was gall stones and pain, not in my case, learn something new everyday, especially on this board.

I am sorry you are having GI issues. 

I had some GI problems when I first started Gleevec and then it went away.  When I had my Gall Bladder out, I had some difficulties, right after you eat you better be close to the bath room facilities.  But that has since went away.  so I am doing good there.  It is the chronic bone issues and recently developed tendonitis in my left hand, just when I started up a massage business in my home.  I go to a chiropractor and physical therapy often.  My husband and I are in the midst of clean out the office, we have it 1/2 painted, it is a large room.  It will be nice when it is done, but it takes us forever and I do mean forever.  After painting is complete, will need to clean to large window and blinds.  Then steam the hardwood floor and put down 2 8 x 10 throw rugs.  Then move all the stuff back.  It will be worth it. 

So tomorrow I'm off to get my 1 1/2 hour massage then to the chiropractor. I knew I would need it after painting. We have a new massage evy in town, open 7 days a week.  If you take out a contract you get a heck of a good deal.  Can't wait to get another facial.  I signed my husband up too he has a bad shoulder. He is 70 years and has some aches and pains, anyhow he said the massage really help him. The house is only 4 1/2 years old, but there are a few things that we didn't get done.  1. The basement is partial finished.  Finished 1 bedroom and 1 bathroom in the basement.  Have a big storage room and utility room. Have all the duck work and plumbing done to put in a kitchen down there. Hope to put a wreck room to entertain.  My husband is a retired electrician he need to get the rest of the framing and wiring down.  I figured we better get it dowe while we are still able and in are right mind.  Well I think mine mind is more stable then my husbands, but I'm sure he would debate that.

It is late, will check in on everyone in couple of days.

PEACE,  PamSouth

[LivingWellWithCML]

Significantly pronounced on Gleevec, or significantly pronounced since the diagnosis of CML?  Hmmmmmmmmm..........

I had a very interesting discussion with a friend at our neighborhood pool over the weekend.  She was diagnosed several years ago with Rheumatoid Arthritis and was in terrible shape ... literally couldn't move because her joints were so stricken with pain, and it was not a good scene.  But over the years, she found a way to treat her RA strictly through diet and meditation techniques, which is pretty amazing.  Not that we can do that for CML (clearly we need TKIs), but there is merit to controlling the stress and anxiety component, as it could be related to some of our side effects.  And I'd like to do it without medication, so that's something I will be working on extensively over the summer.  Stay tuned.

[davedoc]

I am new to Ponatinib.  The side effects are really nagging and discouraging.  I have headaches, bone pain, sore skin, tender nipples, joint soreness and fatigue.  do these get better over time??  thanks

[GerryL]

Hi davedoc,

You might be better to start a new thread with your question, that way the people taking Ponatinib won't miss your question.

[Susan61]

Hi Dave: Gerry is right to start a new topic going, because I do not know of anyone here doing the Ponatinib.  That was the ARIAD trial the last I heard.  Most of us are doing Gleevec, Sprycel, and Tasigna.  I might just not know who has been put on that drug. All these things have side effects, but I hope you find someone who can relate to what you are going through to help you out who is on the same thing.

[GerryL]

I think there are a couple of people on here taking Ponatinib that can help davedoc, it just needs a new thread.

[Susan61]

HI Gerry:  Hope your doing good.  Your right, but I could not think of who is on it.  I have trouble remembering a lot of things lately.

[GerryL]

Hi Susan,

I'm doing well, got my second PCRU - going to talk to my specialist about a dosage reduction tomorrow (4oomg Gleevec down to 300mg). Keep your fingers crossed for me, when I initially mentioned it to him at MMR he was kinda at the stage of "you have to keep hitting it hard". He seemed a bit more open to the idea last visit, when I had my initial PCRU, so we'll see how we go tomorrow.

It's hard to keep track of everyone on the site and what TKI they are on, I could be wrong but I think Beth is on it and doing well. You've been going through a fair bit of stress over the last year or so, which can muck up your memory as you've got too much churning through your mind.

[mcbc83163]

Hi, I'm new to this site.  I have been on Gleevec, 400 mg., for 5 mos.  I do take is at night with my dinner as I have "tummy issues" and wanted to cause as little problem with my GI as possible.  So far, my on issue is that I've had diareeha ever since I started Gleevec constantly.  I'm presently taking a probiatic, immodium D, lots of rice, yogurt, applesauce and nothing has helped the situation.  I'm going in for a colonoscopy and the other test next week to see if they can find a medical reason for the problem.  Does anyone have any suggestions as to how to get rid of this problem.  Thanks, Barb

[GerryL]

I think you're doing all you can do at the moment. It's a good idea to get things checked in case it is anything else. Other than that a switch of drugs might be your answer. Gleevec seems to have the most GI issues.