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A question for those on 800 mg Tasigna

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#1 nathaliece


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Posted 04 April 2013 - 07:40 PM

I was dx in 11/10 and have been on 400 mg Gleevec since the beginning.  I have been PCRU, thankfully, since 3/12. Over the past several months the bone pain has increased both in terms frequency and intensity to the point  I  question if I can handle it while working full time and being a single mom.  The plan is to finish my current script of Gleevec, take a one week vacation from meds and start Tasigna on 4/22 if the EKG and thyroid testing checks out.  The literature I received today at my oncology appointment shows bone pain as a side effect of Tasigna, along with potential heart and thyroid damage.  I would love to hear from those of you on Tasigna, particularly those who have also been on Gleevec.  I acknowledge we all react differently but this board has been so helpful to me during this journey.

I did try to persuade my oncology team to consider a lower dosage of Gleevec without success.

All my best to all of you,


#2 teb


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Posted 04 April 2013 - 08:09 PM

I was dx May 2011. Started Tasigna and had a very difficult time on it. Ended up in the ER with symptoms of dehydration and pancreatis. I was taken off Tasigna and had a week off of meds and moved on Gleevec 400mg. That also was a diaster. Rashes, bone pain, fatigue,my lips swelled up, fevers. I was taken off Gleevec for a week then brought back up slowly 1 wk 100mg, until i reached 300mg I am PCRU now and i remain on 300 mg Gleevec. I do have side effects bone pain,sometimes very bad, my eyes fill with fluid sometimes, I have chronic fatigue but i am PCRU. I deal with the side effects as best i can and trying to live the new normal. My dr has offered to swith to a new drug but I am afraid of the side effects. I feel i am one of thse people who has difficulty adapting to drugs in my system. For now i am sticking with the devil i know... I'm also not happy with my dr. so i don't want to make a switch until i find a dr that i am happy with...So yes i have had success with a lower dosage of Gleevec but i do have side efffects that i deal with.. Maybe you could give the lowere dosage a trial period?

#3 Poihths


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Posted 04 April 2013 - 10:23 PM

I'm presently on 800 mg/day Tasigna.

At diagnosis in 2008 I began taking Gleevec at 400 mg/day, then increased that to 600 mg/day. I always took it with plenty of food and water as the prescription info sheet that comes with the product directs. I learned that would almost always prevent nausea. Fatigue was my big issue; it gradually became harder and harder to get through the day, even though I don't have the kinds of challenges you have as a single parent. Also, my PCR numbers were OK but left room for improvement. For both those reasons, I switched to Tasigna in 2010. I've never had nausea problems. Fatigue crept in slowly, until my muscles used to feel as if they were made of lead, or that I had a lead cape draped across my shoulders. If you have ever put on a coat of chain mail (any Society for Creative Anachronism folks out there?) you know the feeling. And then, very suddenly, that vanished. I literally woke up one morning and it was gone. Since that time, a different kind of fatigue has crept in. I describe it as feeling like it's 4:30 on Friday after a long week. I feel that way much of the time, but not always; it definitely comes and goes. I find I can deal with it by generally taking good care of myself, taking some caffeine around mid-day when I need to, and pacing myself so that I don't wear myself out.

I'm not an expert, but as i read the literature, I can definitely see why your medical team didn't like low-dose Gleevec. On the other hand, as teb's experience shows, you have to work with what you can tolerate.

Attitude makes a big difference. For some reason, I never liked Gleevec, just at a purely irrational, emotional level. I noticed the psychological nature of the response when I realized that I was feeling nausea BEFORE I took the pills. That really made me laugh at myself - which helped!

#4 jjg


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Posted 05 April 2013 - 12:29 AM

I've really enjoyed the switch to tasigna (from gleevec, with some months of other crap in between). I'm coming up to 6 months and feel pretty close to normal, much better than on gleevec (600 and 800). I actually thought I felt fantastic in the first few months on tasigna but it was relative to what came before... now I feel even better. There is a little bit of fatigue that has improved over the 6 months, but not disappeared. There was some muscle pain & I think also bone pain (but could have been muscle) that was worst at first and particularly at night & in the morning but has improved quite a lot in the last month.  No GI issues, life is so much better without nausea. My brain works - I'm back working effectively which wasn't happening on gleevec. There have been a few rashes but nothing huge and never actually complained to my doc about them - next visit as pretty much there is nothing else to complain about.

Don't be afraid to try for an improvement in side effects - you can always go back.

I would question why 800mg Tasigna, this is the starting dose for people who have lost response to gleevec i.e. not people with PCRU. Plus none of the data shows any treatment benefit in being on 800 v 600. The starting dose is normally 600mg and I can't imagine why you wouldn't start with 600mg or even lower given you are PCRU.

Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

#5 mike43147


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Posted 06 April 2013 - 09:01 AM

I have been using Tasigna for 3 years, 800 mg a day.  Yes I have bone pain, is it so bad it's unbearable, no.  The worst time is when the weather changes from warm (winters in Ohio can be unpredictable) to cold & wet.  Come on summer. 

Why the switch to Tasigna and not Sprycel?  Why 800 mg if you are PCRU?  I have never reached PCRU, closet I got was the counts were too low to quantify but still detectable.  If I had to do it over again (I do not have that option, none of us do), I would have started on Sprycel or Tasigna and skipped Gleevec.  Probably Sprycel since the only problem I had, for the short time using it, was remembering if I took my pill(I have a mutation F317L and there is no data that supports Sprycel works with this mutation). 

Good luck in your search for a doctor you like.  I found 2 great doctors that share my test results and communicate with each other and me.  Unfortunately they were not the first doctors treating me for this disease.


#6 nelnorm


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Posted 06 April 2013 - 11:41 AM

I was on Gleevec 400mg and reduced to 300 mg due to side effects..... 300mg did not work as I lost my response within two months and am now on Ponatinib.  I was on Gleevec for one year ... the last two months of the year on the reduced dosage which , for me, did not work.  I understand perfectly about the side effects.  My onc thinks the best is to just start off with the newest drug , ponatinib which is very promising.  I am experiencing side effects and pretty tough but I am hanging in there and it IS finally getting better.  The problem is with my thyroid and we will see what the docs will do about that.... am very hyper .... but they assure me they can "fix" that.... I am not going off the ponatinib ...... have meds for the N/V and the hypertension that it has caused .... hopefully , fixing the thyroid can reduce the need for the hypertensive and N/V meds.    Hang in there!!!

#7 triciad


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Posted 12 April 2013 - 04:11 PM

Hi Nat-

I have been taking 800mg Tasigna for 4 1/2 yrs and have experienced less side effects than I did on Gleevec (1 yr) and Sprycel (2 1/2 yrs).  Fatigue, bone pain, muscle aches and dry eyes are the side effects that I deal with but they are managebable.  My onc may consider a reduction to 600mg at my next apt but I have yet to reach full MMR so she is hesitant.  All the best to you on your journey!

Life is good!


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