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#1 Gail's

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Posted 12 February 2015 - 11:36 PM

I have been on gleevec 400 mg for almost 2 weeks. I'm having a lot of trouble with nausea. Got a prescription for zofran that I've used sparingly but now I'm going to take it before each dose for a while. I'm worried about absorption of the gleevec. I made it an hour then vomited. Hoping to find out if it stayed down long enough? I did email my dr to ask if I should take a second dose when that happens. Anyone have this issue too?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#2 lanadal

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Posted 12 February 2015 - 11:49 PM

I had the most trouble with nausea the first three months. Then it tapered off until after the first six months it got better and better.  Dr. Mauro told me that most of the Gleevec was absorbed fairly quickly. I think 30 minutes is long enough if i remember correctly. I had to  add fiber when I took Zoran or then I was constipated, but that took awhile and was actually helpful at first because I was constantly  running to the bathroom.  Now that is all a blur and I am rarely nauseas and if I am it is usually because I didn't eat enough carbs with the Gleevec.  It does get better!!!

 


My facts: 

Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since.  Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.


#3 Billie Murawski

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Posted 13 February 2015 - 01:10 AM

Hi Gail,

 I've been thinking about you, sorry you have to go through this. Are you eating anything before you take your pill, I know it's hard but I found that if I had something in my stomache , a couple crackers or toast anything will help keep the pill down a bit longer at least. I took my pill after supper, usually it went right through me but I guess I kept it in long enough for it to work because it did. Everybody is probably sick of me saying this but for nausea the only thing that helped me was hard peppermint candy. I still get nausea and I keep a bowl of candy right beside my chair. Don't be afraid to take the immodium if you need it.  It will get better I promise.  Billie



#4 Buzzm1

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Posted 13 February 2015 - 01:51 AM

Hi Gail,

 

I had an ongoing problem with nausea, including occasional vomiting, and found that taking Gleevec an hour after a meal, rather than immediately after, or with the meal, helped solve the problem.

 

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#5 PhilB

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Posted 13 February 2015 - 04:46 AM

+1 to the food.  I found if I took it with just a light snack I felt nauseous, but near the end of a sizeable meal all was well.  Apologies if you are already taking it with a big meal!



#6 Gail's

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Posted 13 February 2015 - 12:08 PM

I had the most trouble with nausea the first three months. Then it tapered off until after the first six months it got better and better.  Dr. Mauro told me that most of the Gleevec was absorbed fairly quickly. I think 30 minutes is long enough if i remember correctly. I had to  add fiber when I took Zoran or then I was constipated, but that took awhile and was actually helpful at first because I was constantly  running to the bathroom.  Now that is all a blur and I am rarely nauseas and if I am it is usually because I didn't eat enough carbs with the Gleevec.  It does get better!!!




Thanks, Billie. I have been taking with food and about 10 oz water. I Don't seem to be able to eat much, so I used a cup of Greek yogurt with it last night. Haven't found the right combo I guess. I start feeling better, less nauseous about 8 hours before the next dose is due. I try to drink a lot during that time but have trouble eating anything heavy. Soup works best. I'll try the peppermint and maybe some ginger which is supposed to help with nausea too.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 Gail's

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Posted 13 February 2015 - 12:10 PM

Sorry, lanadal, I replied to your msg and called you Billie. Thanks for your tips too!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#8 Buzzm1

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Posted 13 February 2015 - 05:38 PM

Hi Gail,

 

My diet went all to hell about 7, or 8 years ago, when i found something

that I absolutely love to do, and basically haven't cooked since.  But since 

yogurt to me, is a fast food, I always have it on hand, and still eat gallons of

it, during July and August when blueberries are in season.

 

But from my experience, yogurt isn't going to protect your stomach from the

nauseous effects of Gleevec.  You couldn't pay me to take Gleevec on top of yogurt.

Think you are likely going to have to do whatever it takes to put some substance in your diet. 

 

Back in the early stages I went off Gleevec for a couple weeks to allow my stomach

to "heal" ... it was that bad ... didn't tell my Onc ... it was a learning experience.

Turns out another med that I was taking in the a.m., sometimes without food, was

compounding the Gleevec problem which, as you know by now, is bad enough by itself.

 

Think of foods you enjoy eating whether they are necessarily good for you, or not, 

and start there.  Like many other things in our lives, this is a learning experience.

 

Best of Luck,

Buzz


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#9 chrissy778

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Posted 13 February 2015 - 08:08 PM

If you get sick Vomit, I would not take another pill until it was time for your next dose with out asking your doctor.....I agree I know its hard but try to eat something. Even if its just a bowl of cereal. Hope you feel better soon


Its never to late to live happily ever after/ Do not squander time; for that's the stuff life is made of


#10 Trey

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Posted 13 February 2015 - 08:43 PM

Splitting dosage 200mg morning and 200mg evening helps reduce many side effects, including nausea.  I split Gleevec dosage almost from the beginning.  My Onc was fine with that and I responded very well on split dosage. 



#11 Billie Murawski

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Posted 13 February 2015 - 09:54 PM

I sure wish I had known about splitting dosage when I was on Gleevac. Gail, I had greek fries and bb'q wings for supper, I'm eating my candy now. What a dummie I am but they were sssssooooooooo good.



#12 chriskuo

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Posted 14 February 2015 - 04:54 AM

Have you tried eating oatmeal when you take the pill?

#13 Gail's

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Posted 15 February 2015 - 11:14 PM

I'll try the suggestions you all have offered. I took my gleevec about an hour after dinner yesterday and did great. Then up at 3 am with vomiting. I don't seem to be able to escape it. Now I'm not sure if it's the med or something else but I will tell you I'm not liking it.

Anyone have trouble with balance or dizziness?
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#14 Billie Murawski

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Posted 16 February 2015 - 01:35 AM

Hi Gail,

  Some people have a harder time adjusting to the meds than others do. It sounds like you're one of the unlucky ones. I had a really hard time too. Are you on other meds also? You will start feeling better soon, I lose my balance and get dizzy, it's not from my wine it's from medicine that's still my story and I'm still sticking to it. Pretty soon you'll be consoling a newcomer and you'll do a much better job at it than I am. I just feel so bad for you and everybody else going through this, I had no support and I remember how scared I was. I'm always a day late and a dollar short that's why it took me 3 freaking years to find this group.       Billie                      



#15 PhilB

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Posted 16 February 2015 - 06:13 AM

Hi Gail,

I'm sorry you are having such a bad time adjusting.  Trey's suggestion of splitting the dose is an excellent one which has worked for many people.  My problems were nowhere near as severe as yours, but I found I was regularly waking in the small hours feeling unwell.  Changing to lunchtime for my G worked well for me, but in your position I would try the split dose route.



#16 gerry

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Posted 16 February 2015 - 08:08 PM

My doc prescribed Maxalon for the nausea/vomitting. Plus I used to take the Gleevec with liquid ginger.



#17 Gail's

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Posted 17 February 2015 - 06:53 PM

Got ginger chews yesterday and they seem to help. I ran into the NP at onc office and she said dizziness is really common with gleevec. I actually think it's causing me to get nauseous when it happens. Sort of chicken vs egg thing. Yesterday was good. Only threw up once. Pretty tired today but I haven't had much nausea. I hope my body's getting used to it.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#18 Darlene_Jack

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Posted 17 February 2015 - 09:57 PM

Gail I hope your feeling better. Sorry to hear your having such a hard time. Hang in there.
One breath at a time

Darlene jack...

#19 Billie Murawski

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Posted 17 February 2015 - 11:12 PM

Got ginger chews yesterday and they seem to help. I ran into the NP at onc office and she said dizziness is really common with gleevec. I actually think it's causing me to get nauseous when it happens. Sort of chicken vs egg thing. Yesterday was good. Only threw up once. Pretty tired today but I haven't had much nausea. I hope my body's getting used to it.

Sounds like you're headed in the right direction, don't eat any greek fries or bbq wings-I'm such a dummy!



#20 Gail's

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Posted 18 February 2015 - 02:55 PM

Hey Biklie, it's funny you mention fries. I normally have a weakness for deep fried salt like chips and fries. Now can hardly stand the thought of fried food at all. Butter on toast ok, but I ate a few Cheetos the other day and got super sick after. What a bummer. BBQ does sound good, as well as pickles. And not pregnant because they won't deliver babies in mental health hospitals!
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088




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