11 replies to this topic

[jlegakis]

I have been on 800 mg. Tasigna for 12 mos. and my running workouts have gradually become VERY labored - heavy legs!  I was dsx. in Feb. 2014 and on Gleevec 400mg. at which time I was actually running 3 KM. races well - no labored running! Does anyone have experience with  PROBLEMS while on TKI's? I have been a long distance runner for decades and each run is a drag... HELP! My breathing, however, is fine.

[gerry]

Have you had your legs looked at to make sure your veins are okay? Small percentage of people get peripheral artery occlusive disease from Tasigna. Vein trouble can give you a heavy feeling in your legs.

[Trey]

You have previously reported very low heart rate.  Does your heart respond when running by getting up to what you would consider normal for the running intensity? 

 

Do you have any abnormal blood test issues?

 

Are you more tired at other times than would be expected?

[kat73]

I've had continual trouble with the heavy leg syndrome.  My private theory is that since tyrosine kinase inhibition kills leukemic cells by interfering with ATP, their energy-producing capability, there is probably the same effect on some healthy cells, possibly the ones that would presumably fuel muscles.  I repeat, this has totally been made up by ME, but it seems plausible.

[jlegakis]

Thanks everyone for your help. I respond well while running as my HB doubles to 70 HBM. I feel OK, but over the last 3-4 mos. while on 800 mg. Tasigna I have had HEAVY legs. In comparing this to a year ago while on 400 mg. Gleevec it is like night and day! Then, I was running 5 km. races at under 9:00 minutes a mile and, actually - WINNING my age group. So, for a 67 year old I was doing well in this regard. In fact, I even did interval 440 yard accelerated 'sprints' in prep for future races. Now, I can barely lift my legs MOST days! I still endure and run 3-4 x per wk. but it is labored... dead legs. I might be going through a phase, so I have NOT given up! My magnesium and electrolytes are A.O.K. and that's about it! Best to all!

[kat73]

I have tried and failed to explain this experience to every medical person I see.  They all look at me blankly.  Usually, they say I should exercise more.  It's as if they hadn't heard me!  I'm going to use you as an example - you certainly exercise enough.  I have tried to tell them that it doesn't get any better - the stairs today are just as hard as last week - no muscle seems to get built.  I am sure it's the TKIs (maybe you were in such great shape that it took awhile for the effect to kick in?) and I'm sure there are others like us out there.  I think sometimes this heavy leg feeling is described as fatigue by others - just semantics!

[tazdad08]

Yes... I agree with kat about mistaking heavy legs for fatigue. That does sound like a better description of how I feel with longer walks. And sometimes how I feel when I wake up. And jlegakis... hats off to you for the ability to run like that!!!!!! I'm 46, previously a workaholic, and unable to run very far if my life dependended on it.

[M.A.]

Hi jlegakis

 

I had extreme 'heavy leg' syndrome for the first few months post diagnosis while I was on 100mg Sprycel. I thought it might have been due to the anaemia I had at the time. It's still there but only mild at 50mg. 

 

I am guessing with your level of fitness it isn't likely to be peripheral arterial occlusive disease (a potential side effect of Tasigna) but I guess it wouldn't hurt to get that checked out. No doubt it's just the TKI interfering with the way your leg muscles are functioning.

 

I hope you find a solution or can reduce dose so you can continue your winning streak!

[jlegakis]

Back again! Still on 800mg. Tasigna and still experiencing deddd heavy legs when I TRY to jog. I looked closely at the side-effects the other day and noticed that a reduced blood flow to the legs was also possible. Maybe that explains why I have such poor muscle function in my legs? When I was on Gleevec and Sprycel I did NOT have this problem and actually was able to compete ,rather well, in my 60-69 age group in 5 km. races.Any studies or advice? I love running and do NOT want to give it up! ..Upper body workouts in the gym show no weakness at all: I am sooo frustrated!

[kat73]

It's possible that the dead legs didn't catch up to you while you were on the other drugs - a lot of side effects don't appear until a few years have gone by, like pleural effusions on Sprycel.  At any rate, I think you can certainly blame the TKI's, just not one in particular.  I don't think there's a solution, other than getting off the TKI's.  When I was off Sprycel for two months, I could run up the stairs again and my legs felt light and quick.  When I had to go back on the Sprycel, the dead legs came slowly back.  They're as bad as ever.

[Aussie Dave]

Hi jlegakis,
Youmight be interested in my post form 2015. I am still on 150mg of sprycel each day and continue to experience leavy legs and fatigue while exercising. My cardio is fime but I just cannot generate any leg strength. I jave absolutely no explanation for the problem and womder if this is just The new normal.

Aussie Dave

[cmljax]

I have not experienced this heavy leg problem at all on any dose of Tasigna.  Plenty of other bad side effects but not this one, at least not yet.