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Just Started Tasigna - need help


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#1 sunshineC

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Posted 04 December 2015 - 03:48 PM

Hi everyone.  I just started Tasigna yesterday (a switch from Sprycel due to numbers increasing) and I originally wanted to start this post to ask if it was all right to take this med with coffee, gingerale, etc. instead of water?  And can you drink for that 3 hr (nothing to eat) period, or is it absolutely nothing?

 

As I picked up my med pack so I could tell everyone how many mg. I'm on (800 BTW, 400 in am, 400 pm) I just noticed something.  Printed on the med pack is "Avoid food for at least 2 hours before taking a dose of Tasigna and at least 1 hour after the dose is taken."  Printed on the sticker, and what my onc told me personally, is "Take on an empty stomach, one hour before or two hours after a meal." I know I'm crazy and have the usual 'brain fog', but isn't this totally opposite direction?  Need help!!!  What are others doing? 



#2 Buzzm1

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Posted 04 December 2015 - 05:34 PM

sunshineC, try thinking of it this way:

it takes food two hours to digest

it takes Tasigna one hour to digest and enter the system

 

take Tasigna on an empty stomach, at least one hour before a meal

or take Tasigna at least two hours after a meal


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


#3 Damerault

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Posted 04 December 2015 - 09:36 PM

This how I take my Tasigna. I have breakfast in the morning. Two hours later I take Tasigna. I don't eat for at least an hour after taking it. At bedtime I take my Tasigna before bed making sure I haven't eaten for 2 hours prior. Sometimes if I eat really late and I am tired I will go to bed and set an alarm for 2 hours and get up and take my Tasigna. Hope that helps. You get used to it.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#4 Trey

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Posted 04 December 2015 - 10:15 PM

Tasigna had some bad luck during clinical trials, and ended up with this burdensome, and usually unnecessary, requirement.  The "no food" requirement was put in place for the 1% of people with QT heart issues.  For everyone else it is probably unnecessary. 

 

The issue is that if someone eats a triple Big Mac with double cheese, extra large fries, and a double milkshake with a slice of whale blubber, all the fat can cause the liver to focus only on the fat and ignore taking the drug out of the bloodstream.  The net result is like taking double dosage.  So everyone suffers from a 1% issue. 

 

If it were me, I would eat some crackers and drink some soda with it.



#5 rcase13

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Posted 05 December 2015 - 08:25 AM

I usually drink water or a root beer with mine. I also occasionally have hot tea with it. Benign drinks according to my OnC is fine. I would stay away from milk or heavy drinks like that. TKIs like a high acid environment. I was told taking it with orange juice or a soda would be a good thing.

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!


#6 sunshineC

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Posted 05 December 2015 - 04:37 PM

Thank you all.  I really appreciate it.



#7 Judithb

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Posted 08 December 2015 - 04:28 PM

Trey,

 

Tks so much.  As a lawyer and type A personality I try to be super compliant with all requirements.  But sometimes I slip up and knowing it is not fatal or even significant will let me relax a little going forward.

 

Good luck, Sunshine.  You will find your own schedule and soon it will be second nature.  I do basically what Damerault does.



#8 sunshineC

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Posted 08 December 2015 - 04:43 PM

Thanks Judithb!  I think I've pretty much got it figured out now. 

Buzzm1, you made it seem so simple to understand.  Priceless!

And I do basically what Damerault does too, except I've never been able to eat breakfast as soon as I wake up.  It's usually 2-3 hrs before I get hungry.  So I take my Tasigna first thing in the morning.  But I HAVE to break the rules and have it with my coffee.  If I didn't have that first cup of coffee first thing in the morning, there's no way I'd even be able to stay sitting up!!   ^_^zzzzz 



#9 kat73

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Posted 08 December 2015 - 04:55 PM

Sunshine - I hear ya on the coffee!  I call it "Life-Giving Elixir."  One thing my husband does for me that puts him on Santa's Nice list permanently is get up first and make the coffee.  With ten thumbs and a pre-coffee brain, I don't think I actually could do it.

 

How is it going on the Tasigna?


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#10 sunshineC

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Posted 08 December 2015 - 05:20 PM

LOL!!!  I like that "Life-Giving Elixir"!!  We have a Keurig.  So far with brain fog and 3/4 asleep (as in more than half asleep), I can still manage sticking the K-cup in, pulling a lever and hitting a button.  I even have a really good percentage of success getting the cup under there in time too!!!  But, that's the extent of my talents first thing in the morning.

I just sent you a message also.  Actually, I am trying not to get too excited.  All I have felt since starting is the fatigue, and I don't think that is even as bad as it was.  I know others have said it takes 2-3 weeks before the side effects kick in, so I realize my days are numbered, or I will luck out like I never have in life.  Either way, I am treasuring these days!!!



#11 story

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Posted 19 December 2015 - 10:44 PM

I took Tas for four and half years and did not worry about liquids, coffee, tea or water. Told my oncologist I drank with Tas and he agreed it was not an issue.

#12 Buzzm1

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Posted 20 December 2015 - 11:40 AM

Talking about coffee, I drink a home-brewed 13+ cup coffee pot everyday, fresh ground San Francisco Bay French Roast (Costco) half regular, and half decaf, black ... sometimes a little more, sometimes a little less, ever since I retired 19+ years ago, and not much less before that; ... coffee drinking and computer work have always gone well together..  

 

Just discovered, beginning with pressure on my left side over a year ago, kidney scare, and an ultrasound where no kidney problems were seen, and then a really bloated and sore irritated stomach, that I am likely flushing the digestive acid out of my stomach, through continual coffee drinking, creating digestive problems and discomfort, not at all unlike the discomfort that I went through in the months after beginning Gleevec almost six years ago, where I had to discontinue Gleevec for a few weeks to allow my stomach time to heal.  It's a little more involved ... my first meal is at noon, when I take Metoprolol, a known stomach inflammatory ... the indigestion created set my stomach up for my evening after dinner Gleevec to compound the problem.   I've stopped drinking coffee an hour, or two, before my noon meal, and wallah, the problem is subsiding.   was taking a 1,000mg vitamin C with dinner to help create an acid environment to aid Gleevec absorption.  Need a little more healing time before restarting the C, but my stomach is beginning to feel markedly better... now it's just the pressure on my left side ... 


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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