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Side Effects of Tasigna


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#1 donkatking

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Posted 07 June 2011 - 09:38 AM

I have noticed that both of my feet have a feling of what I describe of being asleep as well as my left hand.  It bothers me at night s my feet, although warm, have a cold feeling and it is hard sometime to get to sleep.  I have mentioned this issue with the Onocolgist and my PCP.  The Onc said he wasn't for sure about this issue but would check with Novartis to see if others have had the same issue.  They have set me up an apointment to see a Neuroligist in a few weeks.  The PCP is with me as both of us agree it is a side effect of Tasigna.  I saw the posts about the brain fog issue and believe me sometimes I feel like I have that issue also.  I have noticed at work I make alot more mistakes with cases audits.  I don't feel like I am as efficient as I once was.  I like to think of the issue as MADCOW!!  I could not ever give blood as I had been in Europe in the 80's during the MADCOM epidemic.  They say they can't say you have it as there are not tests for it.  So I just blame all my side effects and ills on it.  Maybe CML is MADCOW in disguise!!!!  Just Kidding!!

So far, since I have been diagnosed in February with CML, Thinks have been relatively fine.  I have a few issues with the Tasigna and seem to have gotten used to the few things that bother me on a daily basis.  I feel the worst issue so far, other that the numbness issue is fatigue.  I seem to get that more easily.  My wife and I both have been walking some and we took a nice camping trip.  The fatigue is definitely an issue and I also stay out of direct sunlight as much as possible.  Had heard about people more easily sunburned as the sensitivity to it is intensified with these drugs.  I keep the sunscreen handy.

I'd like to give a thanks to my Onocologist, Dr Bhatia, at Community North Cancer Care here in Indianapolis.  It helps to have someone that is knowledgeable with CML.  He listens, and we talk through my concerns and issues.  I know he said after I was diagnosed with CML within a short period he had four or five more people diagnosed.   The folks there have been very nice and I just wanted to give them all a thumbs up here on the site.  



#2 Taylor

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Posted 07 June 2011 - 10:12 AM

Hi donkatking,

Yep, I think they call the numbness neuropathy.  I haven't experienced it myself (I'm on Tasigna) but I hope it's something that goes away.  I notice my side effects with Tasigna really cycle, and some began and then went away after a bit.  I've got a case of the brain fog too, and I hate it--I'm only 24 so it gets frustrating.

The fatigue thing was a big problem for me at first as well.  I was dx around the same time you were (Jan 31st but I began Tasigna Feb. 10th) and it took me about three months to get over the fatigue really.  At first my red blood and hemoglobin was low, and a month after I was out of the hospital and on Tasigna I went to a work day at a monastery, doing things like planting trees and building fences.  I was a zombie by 3PM and it took me a full week to feel better.  But I took it easy from then on out and tried to build up.  For a while I was getting sleepy at 8:30 or 9PM but after trying to stay fairly active, and after my red counts recovered, I'm finally lasting until my normal bedtime.  My days are usually fine unless I really push it, and even then it's usually not too bad.  It sounds like you're already keeping pretty active though and that's good.

And yep, definitely stay out of the sunlight!  Or at least get some good sunblock (better than sun screen if you find you are super sensitive).

Good luck on the medicine. So far I am happy with it--my blood counts stabilized within a month and I was more worried about the possible long QT than my leukemia for a while.  My onc and I are hoping to be close to MMR by 6 months and I hope you do the same.



#3 jrsboo

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Posted 07 June 2011 - 12:22 PM

Dear Don,

Yay!  You went camping!!!  I have been twice now in my nifty trailer!  This past weekend was one of those serendipitous findings.  We were driving and driving and driving trying to get to the pre-planned campground, when I hit the wall and said, "I cannot drive anymore, we have to stop at the next campground."  La Wis Wis, in Washington is absolutely STUNNING.  Old growth forest at the base of Mount Rainier.  Never even heard of it before. 

As for numbness, I get that too in my toes, but my feet get HOT at nighttime.  Onc had suggested taking my Sprycel in the morning to see if that helped, but all that did was make me fall on my face asleep for the day. 

Anyway, glad to hear you had a nice time camping.

Caroline



#4 donkatking

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Posted 08 June 2011 - 05:29 PM

Yep, did some camping at McCormick's Creek State Park here in Indiana.  It is a very beautiful state park with lots of nice trails.  Very shady campsites, although alittle bit small.  I felt bad the first day I was there but I got to feeling better and enjoyed camping with our friends.  I surely made sure to watch out for the sun and carried a bottle of water with me when I went for walks.  If I got too hot I make it inside to the comfort of the air conditioning.  Trying very hard not to let this CML beat me, although the side effects sometimes make it feel so.      



#5 jrsboo

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Posted 09 June 2011 - 12:24 AM

Yes, first camping trip this year (and first after diagnosis) was during a bone pain cycle.  So I got the trailer set up, took some morphine and slept the entire day, had dinner, then went back to bed.  Got up the next day, still in pain, but managed to go for a mushroom hike, then back to bed until about 5 pm when I packed up and went home, a day early, but I was so tired and grumpy from the pain.

But the few hours I was awake were great!

gotta keep on trying to live as normally as possible I guess.

Going again this weekend, but much closer to home, only about 20 miles, out on Puget Sound.  Not mushrooms this time, but clamming and crabbing and some fishing. 

Caroline



#6 cousineg

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Posted 09 June 2011 - 03:16 AM

Other links:   List of side effects   and  Tasigna






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