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Increase in GI symptoms with Gleevec

Gleevec side effects

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#21 crob20

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Posted 04 March 2016 - 01:19 PM

My husband's Union: Humana supplement, Cigna Pharmacy Benefit. No Medicare part D. I'm so lucky. The Dr's office got me Sprycel copayment card. I didn't pay anything for it.
You are right...last G order was 2015 so there are possibly changes but to pay more for generic is crazy.
The Cigna pharmacy plan through my Husbands Union did better than the plan I had from the place I worked, which was $200/month until I hit 3000$ for the year. The hospital where I worked was " self insured" but managed by Cigna.
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned

#22 Buzzm1

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Posted 04 March 2016 - 01:30 PM

maybe your Dr's office can get you the Novartis co-pay card

they'll also have to specify brand name only

Novartis patient assistance: http://bit.ly/1L7rqPA


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


#23 Buzzm1

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Posted 04 March 2016 - 04:33 PM

My story:  07/2011: sudden severe anemia, followed by WBC spike; 02/2012: Dx CML, Rx Gleevec400; 10/2012: PCR-U; 02/2013: Rx Gleevec300 due to side effects; maintaining MMR4-MMR4.5; Last I.S.: <.00712, GUSB: 0.0007957

Antilogical, have you been bouncing in and out of PCRU?


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


#24 jmoorhou

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Posted 04 March 2016 - 06:33 PM

I've been on Gleevec for two years now and am starting to have more nausea every day...

 

Does any one know of could Trey tell us how many years he took the 400 Gleevec?

 

Omeprazone which I take as needed really helps.  Also Saltines and chamomile tea....


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

#25 Antilogical

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Posted 04 March 2016 - 07:57 PM

Antilogical, have you been bouncing in and out of PCRU?

At my request, my onc let me try 400mg again last year & I immediately attained PCRU, but he lowered the dose again due to the return of the severe side effects.  No more PCRU, but I am very stable at MMR4+.


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.


#26 Buzzm1

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Posted 05 March 2016 - 01:42 PM

I've been on Gleevec for two years now and am starting to have more nausea every day...

 

Does any one know or could Trey tell us how many years he took the 400 Gleevec?

 

Omeprazone which I take as needed really helps.  Also Saltines and chamomile tea....

I believe Trey said he was on Gleevec 400mg for 5 years before reducing dosage; he recently mentioned he has now been on Gleevec 200mg for 7 years.  Trey, please correct me if I am wrong.


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


#27 rcase13

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Posted 05 March 2016 - 06:06 PM

Also Saltines and chamomile tea....


I take Tasigna and am not allowed to take a PPI. I have to take pepcid. But when I have an acid attack the Saltines and skim milk really help. I have these acid attacks frequently. I am getting fat on Saltines!

I thought it funny how different people end up doing similar things to get relief.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#28 Buzzm1

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Posted 05 March 2016 - 08:26 PM

I've been on Gleevec for two years now and am starting to have more nausea every day...

To help deal with the continuing nausea, I waited up to an hour after my heaviest meal of the day (dinner), before taking Gleevec; it helped alleviate the problem, especially when I was taking 400mg.   


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


#29 jmoorhou

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Posted 05 March 2016 - 10:04 PM

I think the nausea might be worse with a high fat dinner, has anyone noticed this?  i.e. tacos and guacamole.


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

#30 Buzzm1

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Posted 05 March 2016 - 10:40 PM

I think the nausea might be worse with a high fat dinner, has anyone noticed this?  i.e. tacos and guacamole.

iMAtinib - Cancer Care Ontario

https://www.cancerca....aspx?itemId...

Oral: Yes (bioavailability 98%). High fat meals reduce absorption (11%) and .... nausea, vomiting, diarrhea, rash, fatigue, abdominal pain, headache,. iMAtinib.


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


#31 crob20

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Posted 06 March 2016 - 02:32 PM

Good observation jmoorhou. I have the habit of allowing myself ice cream on a Saturday night. I will spend Sunday mornings in the bathroom. I will try to notice to see if nausea correlates with high fat.
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned

#32 gerry

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Posted 06 March 2016 - 04:22 PM

Some takeaway coffees would cause an issue for me. I also found taking a probiotic and either psyllium husk or metamuscil helped.

#33 crob20

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Posted 19 March 2016 - 01:24 PM

I'm doing much better on 300 mg Gleevec and different blood pressure med. What a relief!
I also use Metamucil cookies. My BP med has constipation as a side effect...no problem!
Thanks everyone for the support!

I don't know how to have my history on my postings.
Diagnosed 3/09 121,000 WBC. Asymptomatic
Imatinib 400 mg started
2/10 PCRU
3/16 still PCRU but side effects worse. Stopped Imatinib for a week. Tried Sprycel 2 days.
4/16 restarted Imatinib at 300 mg.
6/16 showed 1 transcript
9/16 PCRU returned
5/1/17 Imatinib 200 mg
8/17 showed "1 transcript"
10/17 PCRU returned

#34 Buzzm1

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Posted 19 March 2016 - 01:41 PM

I'm doing much better on 300 mg Gleevec and different blood pressure med. What a relief!
I also use Metamucil cookies. My BP med has constipation as a side effect...no problem!
Thanks everyone for the support!

I don't know how to have my history on my postings.

upper right, click on drop down menu next to your name..

select My Settings ..

on left-side, select Signature

scroll down, enter history/status info, Save Changes

thanks for participating


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





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