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Pancreatitis


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#1 rbrich

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Posted 12 September 2014 - 05:54 PM

Hi all.  I was on Gleevec for about a year and had every side effect known (well almost) and was having ok response.  My onc then put me on Tasigna and was on it for 2 months before my insurance said I had to switch to Sprycel...unfortunately, in only two months I went to undetectable (yea).  Was on Sprycel and immediately I went back to detectable with 4 straight months of increasing percentage (all IS) and terrible fatigue.  Given the poor response and the fatigue we went back to Tasigna (waiting to see if insurance will approve this time).  Two weeks ago I had an attack of Pancreatitis (worst pain I've EVER had).  Wondering if anyone else has had Pancreatitis on TKIs.  I now it is listed as a side effect on Tasigna but I had no indications the first time I was on it and I think I recall feeling some upper abdominal pain at the end of the Sprycel experiment.

thanks.



#2 Trey

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Posted 13 September 2014 - 01:10 PM

A number of folks here have mentioned having pancreatitis, especially with Tasigna.  It does not seem to cause real damage from what is known about it.  But it can be painful. 

 

What were your PCR numbers on Sprycel during those 4 months?



#3 rbrich

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Posted 15 September 2014 - 01:27 PM

month prior to sprycel was 0.00, then:

.045

.049

.199

 

Not the worst in the world but not a good trend either.  That coupled with the fatigue (worse than on Gleevec and Tasigna) led to the change in meds.

Rich



#4 Trey

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Posted 15 September 2014 - 08:50 PM

I would give it one more PCR to see what happens.  If you go up to 1.0% you would possibly need to go back to Tasigna on low dosage.



#5 rbrich

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Posted 22 September 2014 - 12:49 PM

We had already made the switch.  Had my latest tests last week and after about 3 weeks back on Tasigna was down to 0.00% again.  Looks like Insurance won't be making me go back to Sprycel either.  



#6 Cathy

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Posted 23 September 2014 - 09:08 AM

Hi yes I also got Pancreatitis after only 3 pills of Tasigna and yes it was some of the worst pain, just like the spleen pain. Hope not to get either one of them again! I"ve been on all 3 TKI with allot of issues going on 4 years and still not MMR. But I'm close.

With Sprycel I did 100 to start my blood couldn't handle that, went to 50 mg then numbers went up,  so went to 70 now and its having trouble holding and making the numbers to go down! I'm hoping next month to get a downward trend more it did go down a little last 3 month PCR.

Good luck and hope this dose does the trick for you . its such a balancing act to get the proper dose, right drug, to get things to continue to go down!  I'm hoping to reach MMR this year finally !

 

best of luck

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 





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