11 replies to this topic

[SusanL]

Diagnosed 2006, now on my 4th TKI Bosutinib.  My oncologist wants me to have echocardiogram because she hears the aorta heart valve leaking. This makes 2 heart valves, one of which is very common and I have had my whole life.  She said TKI's have been known to cause heart damage.

   Has any one else experienced this after being on TKI's for while?  Or Trey, what does the research say?  Please someone ease my fears.  I'm getting a little weary of this walk.  It seems nothing stays stable for long and when I finally think I have adjusted to the side effects, along comes a new one.

[Billie Murawski]

Hi Susan

  Don't you just love it, we finally accept the fact we have cml I was dx in 2007 and we come to terms with the fact that we have to take tkis the rest of our lives and we try to move on the best we can. Then out of the blue the docs say oh yeah well you might have a heart problem so here comes the panic again. I get a full cardio workup every year because of another problem I have, about 4 years ago my doc said I had a slight leaky valve but not to worry about it, Okay it's not his valve that's leaking, but whatever was going on went away and everything is fine now. Get yourself checked out but try not to get too stressed out about it.They also told me I developed a heart murmur but it's all gone now I just had another bday and I'm not young so I figure every time they look they're going to find something and it's not cml related I'm Just Old .

[SusanL]

thank you so much Billie.  It is always comforting to know someone else goes thro the same gripping fear when these things threaten.  I am very grateful I have a very diligent, cautious Dr. who listens and takes everything seriously and I can communicate any time I need to by e-mail between appointments.  But 10:00 at night its just me and my neurotic mind which reacts to every little twinge in my body.  

  I am almost 74 and have many other things wrong with me that would be there if CML had never knocked on my door.  But at this point that doesn't calm the fear.

  thanks for the encouragement.   I know with the sun, which will come up tomorrow (especially here in Ca) I will get through this.  What TKI are you on?

[Billie Murawski]

I know Susan nights are the worst, we lie there and think our hearts beating 200 beats a minute it sure does feel like that doesn't it. I'll take my pulse and it's barely 80. Or the chest pains I figure thats the big one coming here I come Jesus, then I fart a couple times pain goes away and Jesus says there ain't no way you're coming up here smelling like that! I take 20mg Sprycel now and still holding pcr. I really don't feel that much different on 20mg than I did on 100mg.  I hope you sleep well tonight.

[dede5]

The list of side effects that comes with my prescription for Sprycel includes 'irregular heartbeat or other heart problems'. I suffer from A Fib, which falls into that category and is kicking my butt lately. I've been controlling it with a beta blocker for about 2 years, but recently it's started breaking through a few hours after taking the med, more times than not it wakes me up at least once during the night. Scary, uncomfortable, and wearing me out are three of many things I'm dealing with right now. Billie, the next time I have that I'll remember what you just said and maybe it'll take my mind off of it LOL. Susan, I haven't experienced the leaky valve problem, but I can certainly relate to your fears and frustration.

[Marnie]

My echo also showed a leaky valve and the cardiologist tech said it was nothing to worry about.  I've had irregular heart beat my entire life.  Worn a holter monitor twice (before cml) and nothing serious ever showed up.

[alexamay09]

Hi Susan

 

I started on Nilotinib and then was put on to 140mg sprycel per day because my haematologist felt my bcr-abl wasn't coming down quickly enough.

 

Now after 2 years on sprycel I've had to change to imatinib.  My echo result was not 'normal' and I also have PE so now my doc says I'm off sprycel and won't be going back on it.

 

Another TKI, another load of SE's!!!

 

Alex

 

 

[Lisa Lisa]

Billie thank you for the post, I really belly laughed reading it. Sometimes its the little things.

[Susan61]

IT is so hard to figure out what goes on in our body.  I have been on Gleevec since 2000, and I just had to get a pacemaker this past June.  Now I am having dizzy spells and pain in the jaw which is a indication of heart trouble.   I also suffer from sinusitis, and ear issues so my dizziness could be related ot one of those.  I am going to see a top Oncologist where I had the pacemaker put in, and I want a work-up to see why I feel like this.

Heart Disease runs in my family on both parents side.  I think I would have had heart issues without a TKI, but it is frustrating when Your doing so well on your TKI and are facing the possibility of a heart problem.

I Love Billie's remark, and its so true too.  We could have bad gas which could feel like a heart attack too.  Worry only makes it worse.

[hannibellemo]

Alexa,

 

I've been on 50mg Sprycel for 3 years since my PE and it has worked well. Marnie is also taking a reduced dose although she has had a couple of PEs since then. If you liked Sprycel (I know strong word "like") you might want to discuss lowering your dose and see how you do. I would only do that if you were MMR before - I have no experience with any response lower than that with a reduction in meds.

140mg. of Sprycel was way too high IMHO!

 

Good luck!

[alexamay09]

Thanks Pat   Here in the UK things are done differently.  I'm hoping the imatinib (Gleevec) works for me. I agree I was on the high dose of sprycel for too long.  They finally reduced it at Christmas to 100mg but I still had the 'abnormal' echo.  So far I'm itching and have puffy eyes, feeling a bit sorry for myself but otherwise fine.  Wish I could just get something that works and stay on it......

 

alex

xx

[pammartin]

The 140 mg Sprycel darned near kicked my rear. I was on it for abut three months with a few breaks.. I was also on hydrea. Best of luck on the 100 mg. Hoping you find some relief.
Pam