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After almost one year I developed diarrhea all evening after I take the Gleevec...


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#1 jmoorhou

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Posted 30 December 2014 - 08:08 PM

Do I have to add another pill, Imodium?


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#2 Antilogical

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Posted 30 December 2014 - 10:22 PM

I have the same issue.  Now, as soon as I get that "overactive" feeling, I take Imodium.  Since it happens so frequently, I cut the dosage to 1/2 pill increments. I usually only need 1 or 2 doses.  Also, when I travel for work, I take 1/2 pill when I depart as a pre-emptive measure.  I'm paranoid that "it" will hit the fan when we're sitting on the tarmac.


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#3 Billie Murawski

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Posted 31 December 2014 - 01:16 AM

Sorry you got nailed by the Gleevac, I was on it 3 years and I sharted for 3 years. My onc said it's safe to take up to 7 immodium a day.  That sounds pretty extreme  but there were times I came pretty darn close to 6. It's a wonder my green eyes didn't turn brown!

                                   Good luck Billie



#4 carrie

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Posted 04 January 2015 - 03:13 PM

Seven plus years here on Gleevec. Diarrhea comes and goes with me. Sometimes it will last several weeks. I have discovered that certain foods trigger it. Eggs is a huge problem and any thing like gravy, spicy sauces,....so start keeping track of what you eat and how bad the diarrhea is and you might find a correlation. I did.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#5 Floa7

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Posted 04 January 2015 - 04:34 PM

Three years on Gleevec and first year and half I was well cleaned out. I started a Calcium pill + D with vitamins and that pill has saved me..... I still have my bouts,  but not that much.


1 2012 CML detected Started Gleevec 400 mg

In nov 2014 my pcr started to rise by Feb I stopped Gleevec and went onto

2 2015 Tasigna 600 mg/day

I have been PCRU for 2 years and stopped Tasigna 4 7 2017

5 8 2017 results 0.008

5 30 2017 results 0.028 

6 30 2017 results 0.3, I have restarted the Tasigna because it went above 0.1 

 

My son

11 2011 CML detected Started Gleevec 400 mg

He went 2 1/2 years on gleevec and lost PCRU

Started Sprycel went PCRU for 2 years and stopped the Sprycel, went back for 3 month checkup and PCR was 8.0

He went back onto Sprycel and now is PCRU again

3 16 2017 results 0.008

6 1 2017 results 0.002


#6 Gerry - CML

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Posted 04 January 2015 - 08:15 PM

Coffee could cause an issue for me, I wound up switching to tea for awhile. Eventually I found I just had to be careful where I bought my take away coffee.

You can also include some fibre in your diet, eg metamuscil, it hads substance to the bowel movement.



#7 chriskuo

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Posted 04 January 2015 - 08:41 PM

I had occasional problems with Gleevec, but most of the time what worked best for me was taking it in the morning with oatmeal and banana.



#8 chrissy778

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Posted 05 January 2015 - 12:00 PM

After a year and a half on Gleevec I started with severe muscle pain. It lasted 3 months and I am really happy to say it went away....Hopefully this side effect will go away soon for you also. My Dr said if I switched from Gleevec to something else who knows what side effects I might get. I have been really lucky with no side effects till that point, so I stuck it out. I am glad it is gone....


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


#9 jmoorhou

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Posted 05 January 2015 - 04:50 PM

I was taking a cranberry supplement with added Vitamen C, it stopped after I cut down on it.  Taking high does of Vitamen C has done this to me before.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#10 Gerry - CML

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Posted 05 January 2015 - 09:15 PM

I tried taking liquid fish oil for a while, then discovered that was another source of the diarrhea. I can take capsule form okay.



#11 Billie Murawski

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Posted 05 January 2015 - 11:12 PM

I tried taking liquid fish oil for a while, then discovered that was another source of the diarrhea. I can take capsule form okay.

Gerry, Rons doc put him on fish oil, he smelled so bad I took him off of it. We tried several different kinds and he still stunk even the house was getting an odor. He loves garlic and if he eats too much same thing he stinks. He doesn't sweat a lot he just stinks :wacko:.

                                                              billie



#12 Gerry - CML

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Posted 06 January 2015 - 09:09 PM

Billie,

They must have had him on the highest level of fish oil - was if for joint pain?

I know garlic can come out through the pores if you eat too much of it.



#13 Billie Murawski

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Posted 06 January 2015 - 10:24 PM

Billie,

They must have had him on the highest level of fish oil - was if for joint pain?

I know garlic can come out through the pores if you eat too much of it.

Hi Gerry, Doc put him on it for High bp& cholesterol I can't remember the dosage but it was pretty high dose I think. Oh boy that was  nasty, I didn't say anything at first because I was afraid I'd hurt his feelings,I couldn't sleep in our bedroom it was too woofy, How can someone get an odor like that and not know they smell? I figured he thought it was me and he didn't want to hurt my feelings! I finally told him one of us is leaving the fish oil or me. Smart ass said he had to think about it. But I got even with him good, I went on Sprycel sometimes it really gives me gas. At first I tried to blame Annie but we don't have her anymore. Well I must admit she even kept her distance from me sometimes.              Billie



#14 hannibellemo

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Posted 07 January 2015 - 09:30 AM

I remember when Vitamin E was the "Supplement of the month" and it exuded through pores, too, and made everyone who took it smell bad.  :) Garlic is like roses compared to Vit. E!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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