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Tasigna and its side effects...

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#1 steelpony5555


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Posted 03 February 2016 - 08:51 PM

Ok, been on Tasigna for almost a year now and have read on here all the questions folks have bout it's side effects.  So I figured I would list all mine and how bad they were to give nubies an insight to what to expect.  It seems many of the effects I have had would come and hang around for a couple weeks and be gone on to the next side effect.  The first I remember was nausea.  Not too bad and lasted a few weeks.  When that ended I had sharp stomach pains.  Hated these more then the nausea, but again lasted a few weeks and was gone.  Then we lost our appetite.  Not necessarily a bad thing since losing 30 lbs for me was a good thing.  I have since got it back and also a few lbs too.  Then there is the fatigue.  I mean it's nap time right here and now fatigue.  It has gotten better but I still have days where a nap is necessary.  Also have experienced some hair loss.  Hope some of it comes back since I don't have that much hair to begin with.  Along with an itchy scalp.  I am also having trouble keeping my sugar in check.  Seems like just when I get my insulin just right, my sugar shoots up.  This is still a work in progress.  I am now having a problem with I guess you would call some kind of cysts in my hair line and eye brows and on my ears.  Going to see a dermotolgist next week.  Also have to talk to him bout the spot on my ear the Doc thinks is some form of skin cancer....But as long as I keep heading in the right direction with my blood I guess we will continue to put out these small fires...  If the sugar gets much more out of control I may have to talk to Onc to see bout changing to a different med....

#2 Buzzm1


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Posted 03 February 2016 - 09:04 PM



Known Side-effects

Gleevec Imatinib http://bit.ly/1SWEl7W
Tasigna Nilotinib http://bit.ly/1RNVh1i
Sprycel Dasatinib http://bit.ly/1Klbqn3
Bosulif Bosutinib http://bit.ly/1OXC7DL
Iclusig Ponatinib http://bit.ly/1nbKWzI


I registered 128 on the glucose fasting test prior to my Oct. 30 annual physical so my PCP loaded me up with all the testing paraphernalia which I have managed to avoid using as yet.  I attribute the reading to Gleevec, or perhaps a lab error.  I don't need another problem to deal with; in the meantime I'm avoiding sugar/sweets.

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


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 steelpony5555


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Posted 03 February 2016 - 10:36 PM

Sorry but anybody that has contracted CML has studied every internet subject they could find, including myself.  But is just not the same as seeing it on line from a real person or chatting about it....just look at this site and the number of threads started about side effects....it's the reason I posted my experiences here too....I appreciate the links but I'm just trying to give people a face for some of these side effects...

#4 gerry


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Posted 03 February 2016 - 10:39 PM

Hi steelpony

Tasigna folk will give you a reply soon, can depend on time zones. :)

#5 Frogiegirl


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Posted 03 February 2016 - 10:56 PM

Steelpony5555 no brain fog???? that's a big one for me on tasigna..... I too have most of what you described, itchy scalp and hairloss ...... the pain where my spleen was swollen isn't gone either, if I sit in just the right position (driving) it really acts up. Insomnia and excessive sleep have been issues and still are as well. weight loss too. Also very achy joints they feel swollen most of the time. Did I mention the toll its taken on me financially???? :angry:   Also I'm stuck at diagnosis age, have no idea why that is, just feel like life stood still after getting the "news" F.Y.I 26 months so far on tasigna

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#6 steelpony5555


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Posted 03 February 2016 - 11:17 PM

Nope, no brain fog...but like I said I get something for a couple weeks and that one ends and starts something new, so who knows, brain fog may be in the future lol lol.....Have had some insomnia cause I get up at 6am sometimes and since I have been retired I sure don't do that normally lol lol

#7 tazdad08


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Posted 06 February 2016 - 11:09 AM

I am glad to see someone else that says the side effects come in a wave pattern. It varies on what side effect is more prevalent. The two that never ease up for myself is fatigue and pain. The chemo brain rates #3. its always there but differs from time to time in severity. being 44 and not remembering what the name of your childs school can be scarey   

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

#8 rcase13


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Posted 08 February 2016 - 09:57 AM

I have a new side effect. Lately I have been getting unexplained bruises with a hard nodule underneath the bruise. As far as I know no injury occurred, at least not that I recall. I may have hit my hip on something I just don't recall. I see on the Tasigna side effect list that hematomas are listed under common. Very strange. I will mention it next time I see my OnC.

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!

#9 steelpony5555


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Posted 08 February 2016 - 09:22 PM

Yeah, I will be glad when this next wave is done...these cyst nodules are a real pain in the keyster.......But the way it is something worse could be next...

#10 Terran


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Posted 15 February 2016 - 09:54 PM

My brain fog seems to have eased, this week at least. I can count on my scalp always itching. Muscle pain comes and goes, as does energy level. It's hard working full time when all I want to do is nap. I did a few months on Sprycel. I had a headache the entire time. I've been on tasigna almost a year. I'm 45.

#11 Headi


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Posted 22 February 2016 - 09:32 AM

I haven't heard anyone else mention neuropathy in the feet or a strange smell. I have had nerve & circulation tests done & no problem with either, but I still have the numbness in my feet. Also the smell I am getting goes on 24/7 & is now the only thing I can smell. Also coming with that is a loss of taste. This is devastating to me as my hobbies are gardening & cooking. I'm wondering if anyone else has had anything similar? I would very much appreciate any input I can get as I have had problems with both gleevec & sprycel, so don't know where to go from here. I know that living with this nasal problem is unacceptable to me, but of course so is death by CML. Thank you all in advance for any help you can offer. Headi

#12 minu


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Posted 22 February 2016 - 01:18 PM

Muscle cramps, high blood sugar, constant fatigue, memory lapse are the ones I am struggling with. I have my ups and downs. The lost hair grew back, rashes are on and off, skin has become thin and permanently sensitive. Minu

#13 steelpony5555


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Posted 23 February 2016 - 09:52 AM

Headi.... I do have really bad neuropathy of the feet.  I associated it with diabetes.  But mine is so bad I can't sleep.  I am on max dose of Gabapentin for the pain which at least dulls it enough I can sleep but the pain is always there.  Maybe I have to look at possibly the Tasigna is making it worse.  I am going to a podiatrist and will see.  ...........My cystic nodules have all but left so now it is just an itchy head and still get the fatigue.  A new development is possible skin cancer on my ear,, waiting for the biopsy to come back..........would be interesting to hear if anyone else suffers from neuropathy.....speak up if you do...

#14 Trey


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Posted 23 February 2016 - 01:02 PM

Also the smell I am getting goes on 24/7 & is now the only thing I can smell. Also coming with that is a loss of taste.


The smell may be blood in the nostrils from breaking capillaries.  It would not result in a nose bleed since the amount of blood is tiny, but the blood has a distinct smell.  That happens more in the winter.  If it clears up in the Spring then that was the likely cause. 


Taste changes are less definable, but can be related to TKI drugs.  Sometimes a metallic taste may cloud other tastes.  This often goes away over time, but not for everyone.

Edited by Trey, 24 February 2016 - 11:24 AM.

#15 hannibellemo


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Posted 24 February 2016 - 07:20 AM



I developed neuropathy in my feet when on 100mg of Sprycel. It was suggested on another reputable site that I try up to 300mg. of lipoic acid (available OTC most anywhere) daily.


This is commonly prescribed for diabetics in Europe and I was told I would know if it was going to work for me within 3 weeks, if it didn't work in that time period it probably wouldn't help me.


It did work for me and my onc gave his blessing but he said he wouldn't take it for longer than 6 months. I didn't ask why which is not like me (i'm kinda like a two-year-old in that respect). I used it twice over a two year period, it worked both times and the neuropathy never returned. It's worth a try!


Good luck!



"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>

#16 Cliffee



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Posted 24 February 2016 - 01:51 PM

I'm happy to report absolutely no side affects other then some elevated Liver numbers early on. Ive been on Tasigna for over two years 600mg/day.


Before this I was on Gleevac which wasn't too bad. Puffy eyes and muscle cramps were the main ones I remember.

#17 steelpony5555


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Posted 28 February 2016 - 09:39 AM

Well I would like to unwelcome my newest, hopefully less then the normal 6 weeks side effect......the sharts. :wacko: ......I thought it might have been something to do with the hemroidectomy I had last year....but it just started about 2 weeks ago and now I read where others have had the same problem here.....a PITA

#18 Carlsbad Linda

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Posted 10 March 2016 - 02:58 PM

I was on Tasigna for about a year before I received what I thought was my first side effect--- a rash with itching on my arms, legs, upper chest and upper back.  My doctor was skeptical that I would receive this reaction after having been on Tasigna for so long.


Has anyone else had such a delayed reaction?  We're still not sure it was the medicine, but it has been clearing up since I have temporarily stopped taking it.


Also, has anyone been on Gleevec and then Tasigna?  Any differences?


Finally, I started taking Tasigna at a half-dosage by mistake (300 mg/day) and received excellent results.

#19 kat73


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Posted 11 March 2016 - 11:26 AM

Yes, I think many times SE crop up at a couple of years out.  They also come and go in cycles.  Weird.  I have no explanation, but I think there is enough anecdotal evidence from those in the trenches (us) that it's a true phenomenon.  Pleural effusions with Sprycel, for instance, often don't appear until after a year or two.  And now, cardiotoxicities are showing up in the elderly among us and those who have been on TKIs long term, something that was not anticipated from clinical trials.  If I had to guess, I'd say what most of us are always very uneasy about:  that there are slowly developing consequences on healthy systems from the daily unintended "hits" of the TKIs.  I think those systems make a valiant effort to work around, or work harder, or shrug off tasks that the TKIs prevent them from accomplishing in their accustomed manner.  And, bit by tiny bit, they are compromised - unnoticebly at first, but finally breaking down - we get side effects first, and then, maybe, real trouble down the line.  Anyway.

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.

#20 thatguy


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Posted 14 March 2016 - 10:32 PM

I was on Tasigna for about a year before I received what I thought was my first side effect--- a rash with itching on my arms, legs, upper chest and upper back. My doctor was skeptical that I would receive this reaction after having been on Tasigna for so long.

Has anyone else had such a delayed reaction? We're still not sure it was the medicine, but it has been clearing up since I have temporarily stopped taking it.

Also, has anyone been on Gleevec and then Tasigna? Any differences?

Finally, I started taking Tasigna at a half-dosage by mistake (300 mg/day) and received excellent results.

I was on Gleevec 400 MG for 9 months. 2 weeks after initiation, debilitating, persistent nausea. 1 generic 4 mg Zofran taken with the Gleevec daily, solved the issue, and I was fine. 2 months ago I started 600 MG Tasigna, had slightly out of range blood sugar, bilirubin and alt initially, which actually normalized 3 weeks ago, and 2 weeks ago started 800 MG Tasigna. No nausea at any point with Tasigna so far, however I've had blurry vision, requiring squinting to read at distance, upper-right abdominal (liver area) aches (could be muscular) and lower back kidney area ache (again, maybe muscular). I say it's a toss up between which I prefer, except the Tasigna eating schedule requires some diligence.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

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