25 replies to this topic

[steelpony5555]

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....

[Buzzm1]

JFYI:

 

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.

[steelpony5555]

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...

[gerry]

Hi steelpony

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

[Frogiegirl]

_{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????    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}

[steelpony5555]

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

[tazdad08]

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   

[rcase13]

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.

[steelpony5555]

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...

[Terran]

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.

[Headi]

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

[minu]

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

[steelpony5555]

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...

[Trey]

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.

[hannibellemo]

Headi,

 

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!

[Cliffee]

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.

[steelpony5555]

Well I would like to unwelcome my newest, hopefully less then the normal 6 weeks side effect......the sharts.  ......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

[Carlsbad Linda]

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.

[kat73]

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.

[thatguy]

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.