22 replies to this topic

[jenn]

At first we thought we thought it was stomach flu,nausea,diarrea,feeling generaly crappy...... now it's a month later  and comes and goes.My husband has been on Gleevac for 6 months and has had No side effects until now ( well at this point we are blaming the G) Any helpful hints or suggestions that have helped anyone. Poor guy hase been living on crackers and bannana's !!! THANKS !!!

[Susan61]

Hi Jenn:  Sorry your husband is suffering with nausea.  Is he eating a decent meal prior to taking his Gleevec.?  Even after being on Gleevec now for 10 years, I still get a bit of nausea sometimes.  Not as bad as your saying your husband is getting, but I always eat a good breakfast before taking my pill.

     I have been on 400mg. daily since I started taking Gleevec in 2000.  Maybe he is on a higher dose.

     I am not familiar with your husbands case, so I really cannot give much more advice.  I can tell you that sometimes I wake up with a queasy feeling, but it passes real quick.

     I did develop some GERD (reflux) from the Gleevec, and that can upset my stomach at times too.  Is he having any heartburn?

     I have to take Nexium everyday also.

    Just check out a few things to see why he is having such Nausea.  Hope you can figure this out soon.  I feel bad for him going through this.

[jenn]

Thanks Susan... Wow 10 years,that is an inspiration !! He is on 400mg also and takes his after dinner,we thought @ bed time would be better,maybe he would sleep through any side effects. He is on a healthy diet,it has only been this past month w/ the nausea,diarrea so he hasn't been all that hungry lately,well he is hungry...he eats then feels like crap. He has his 6 mth BMB on Monday, I guess he can discuss this w/ his doc,I just hate to see them give him another pill. Weird how he was fine for 6 months and then it crept up ? Have a great weekend !!

[Marnie]

Hi, Jenn. . .your husband's situation sounds somewhat familiar.  I take my pill with a very late dinner. . .7:00.  It works pretty well for me because usually I don't have much in the way of side effects until the morning, and then things get cleaned out pretty well before I head off for work.  I do seem to have worse problems when we eat out or have some disruption in the "schedule,"  or if I take the pill on an empty stomach.  Also, if I just have salad for the meal, things get pretty bad.  Wish I had some advice for you, but usually for me, I just have to wait it out.  On the bad days, the nausea is pretty awful for about 3 hours, and then after a bunch of trips to the bathroom I feel o.k again.   I've been on Gleevec for just over 18 months, and have noticed a gradual increase in side effects, though at this point it's manageable.

Good luck figuring out what works for your husband.  For me, crackers and bananas just wouldn't cut it at all.  I'm definitely much better if I have a substantial meal.

Marnie

[GerryL]

Hi Jenn,

I take my Glivec in the morning with breakfast as I want to get it over and done with for the day. I have only vomited twice with it when I didn't have enough food with it and occasionally feel a bit queasy, but I'm usually on my way to work by that time and out in the fresh air which does makes me feel better.

If he has been to the doctor and had a check up and it isn't anything else, then the doctor can prescribe something to help with the nausea. It might also be worthwhile to keep a food diary as I've read some people can develop gluten or lactose intolerance while on Glivec. I can no longer drink coffee - about five or ten minutes after having a flat white, I'm off to the toilet with stomach cramps and diarrhea. I always keep some Gastro Stop on hand just in case something else upsets my tummy. I've also read side effects can come and go and just when you think you've moved on and everything is going well, something will pop up - but they also appear to be less intense as time passes.

Hope he feels better soon

Gerry

[MJL]

There has been a nasty stomach virus going around this year that has caused all the symptoms you described. I know because I had it, as did my niece. who does not have CML or take Gleevec. It lasted for over a month. My son also caught it but his cleared up after about a week. So it may not be the Gleevec. Some foods that work for upset stomach and Nausea are Pretzels, canned peaches, grape juice, rice, toast, broth, noodles, applesauce, yogurt, bananas. I had terrible stomach issues for almost a year when I started Gleevec. Finally I decided to try eating a very large breakfast then taking my pill. So far, so good,. (knock on wood) I am diabetic and was trying to be careful with my sugars and carbs, but thought I would throw caution to the wind with my large meal, I am happy I did.

MJL.

[Trey]

If he is taking the Gleevec as a single daily dose, splitting the dosage in half and taking it twice per day has helped a number of us.

[SunNsand]

jenn -

   I have had the GI problems since I started Gleevec 2 yrs. ago. I pretty much eat, oatmeal, toast, crackers, it's a horrible diet but it's really all I can tolerate. I have to make a point of eating some protein. Occasionally I will have a really great day and my husbands gets excited because I want to eat so we will go out for dinner.  I did develop an intolerance for ice cream and I have cut back on the amount of milk I drink and it seems to help. I was trying to deny the dairy intolerance until just a few mths. ago as I really love milk. Time will tell if your husband has a virus or it's his system learning how to get along with his new medicine.  I did have some side effects in the beginning that did improve so I hope your husband gets feeling better soon.

[Susan61]

Hi:  I picked-up on the milk issue you mentioned.  I do not drink milk, but I am a coffee drinker.  The milk in my coffee does not bother me, but if I eat Ice Cream I am in pain with abdominal cramping shortly after I have it.  I never connected it with my Gleevec.  Never had this problem before.  Its good to hear what others have found out.

       I need to lose weight, and have been trying to diet.  I have not had  Ice Cream which I love since Jan 1, and no cramping now that I think about it.

      Thank You for mentioning that.  I wonder if taking a Lactaid Tablet when

[CallMeLucky]

try taking on a full stomach with a large glass of water.  If taking before bed, a bowl of oatmeal about 15-20 minutes before taking the pill might help.  If it persists, he should talk to his dr, they have medicine they can prescribe for him to help with nauseau, he should not have to suffer with it indefinitely.

Best of luck.

[everonward]

Hi

I've been on Glivec for 5 years. I take it with my evening meal. like your husband initially to sleep through any side effects. Only recently, however, did I find myself feeling a bit nauseous after taking my pill. I realised that I had got a bit blasé about it and had started to move about straight after taking it instead of sitting still for 30 mins. Gone back to the old routine of sitting and no nausea.

When we eat out I take it when we get home, this works for me.

Hope he gets better soon - nothing worse then a 'poorly' husband.

Marian

[Zees]

If he takes his G as one dose, splitting it to two or more doses can help decrease the intensity of the side effects. He can also talk to his doctor about safe long-term antiemetics. I take zofran now, and I used to take kytril. Zofran comes in pills (SL or oral), whereas kytril comes in shots, pills, and there's a new multi-day patch out for it, too.

Yeah, more pills aren't the funnest thing on earth, but they're sure better than the side effects! I haven't had any side effects from the zofran itself, and I know quite a few people who take it for years.

[jenn]

Thanks everyone !!! Today he feels great !!!! We will keep track of what he eats and when he gets nausea,maybe its not the g ??? 

[helenet]

I have one more suggestion.  I was constantly with diarrhea from the Gleevec until someone recommended probiotics.  I take Dr. Ohhira's probiotic daily.  It took a few weeks of diligently taking these-- but the majority of my stomach issues (including gerd) have improved immensely.  Certainly it will not hurt to try this. I am totally convinced that they work.

[SunNsand]

Yes I too use probiotics and they do help with diarrhea.

SunNsand

[survivor77]

Hopefully our state will become a legal Marijuana state.  I find it to help when nothing else can.  It just takes away the yuck and releases the tightness in my gut and stomach.  During my drinking days I was hung over often and always looked to pot for releif.  It worked for that and it works for my side effects.  I just feel like I'm smoking it like crazy.  I feel good want it to stay and not go away.

[jenn]

that's interesting...when he wasn't feeling well before dx,when all we knew was he felt horrible I went and bought him probioticst

in an attempt to heal him,3 days later after a blood test,he found out he had cml,finished up the probiotics we had and we didnt buy anymore.I think we should go get more !!! He was takeing them thru his first month on Gleevac and felt fine...thanks !!!!

As far as the mary jane...he wishes,he has a commercial drivers licence and also random testing w/ zero tolerance w/ his employer.He could easily get his green card here but it means nothing to his employer..... cant really afford for him to stay home and smoke pot... Although,if it made him feel better and it was possible I would support him !! And maybe even join him !!

[dee145]

I could not take my Gleevec no way with out getting sick.  My dr. put me on the nausea pill Zofran also.  I take it about 30-45 mins. before I eat than i have supper then I take my pill and I always eat a yogurt afterwards.  Maybe the yogurt is in my head but some one told me to do that and I do.  I have tried to eat with out the Zofran and got sick every time so when I said something to my onc. he replied "God made every one different so just take the damn pill and not get sick".  I have many other issues but got the pill down except the days I don't really feel hungry and have to force myself to eat.

                                                                Dee

[survivor77]

I already am on Sprycel.  About 10 months now.