10 replies to this topic

[mlk210]

Do you get regular EKG's? I had one before starting therapy, but other than a trip to the ER for shortness of breath, my onc hasn't done one.

Edited by mlk210, 01 June 2015 - 06:04 PM.

[chriskuo]

How long have you been on Sprycel? and what was the cause of your shortness of breath?

 

I would think you should have one after being on Sprycel several months to compare to the pre-Sprycel TKI.

[reedgirl]

My hubby has had echocardiograms, ekg's, and chest x-ray's once a year since starting Sprycel in 2011.  He was hospitalized 2 weeks ago due to shortness of breath, more than normal, and a heaviness and tightness in his chest.  He never ever ever complains about feeling bad but for a few days was having trouble breathing, then said he felt like there was an elephant on his chest.  Went to the ER, they admitted him, ran several tests including a stress test.  Everything came back good.  Still has the same issues, just nothing showing up.

[mlk210]

I've been on Sprycel for a little over 9 months.

 

I had the shortness of breath after about a month into treatment. This sounds crazy, but it was this pressure in my throat for a few hours after taking my Sprycel (for several days). They found thyroid cancer from the CT scan they did in the hospital. After they removed my thyroid a few weeks later, I never got that pressure again. I know Sprycel had been tested on thyroid cancer to slow the growth, so I'm not sure if the Sprycel was working on that or not. Weird that the feeling never came back after I had it removed though.

 

My onc sent me for an echocardiogram and everything was fine. It gave them a baseline for the future. Then I had a stress test in November, still everything good.

 

Just wondered if I should be asking my onc to conduct an ekg since I'm taking the Sprycel. I knew it was important for Tasigna users, but not sure about Sprycel. 

 

Thank you both for your comments! I hope your husband feels better soon, Reedgirl.

[pammartin]

When taking Sprycel I am convinced the heart must be monitored.  Had I been having regular testing I would have no suffered from the PH to the high extent. 

 

They professionals are changing how they look at things, but Sprycel seems to be very nasty with heart and lung problems after longer term use.

[mlk210]

Thank you, Pam. Can i ask what your symptoms were for ph? Just curious, I like to be an advocate for my health.

[hannibellemo]

mlk210,

 

I've been on Sprycel since 2009 and I have EKGs about 3 times a year. 

[sunshineC]

I've been on Sprycel just a little over a year now.  I was very out of breath in the beginning and it seemed like a long time to be able to walk normally.  My first onc did nothing.  When I switched, my new onc ordered an EKG - everything normal.  I still get out of breath sometimes, mostly when I'm in a hurry, walking fast.  They just ordered an echo to be done in July.  I thought they were the same thing, but after "googling", see that they're not.  Anyway, because I trust my new onc, and from different things I've seen others go through here, I will comply.  Normally I would question the necessity, mostly because of the cost, and because not much has changed since the EKG was done.  But after all this, seeing what the echo tests for, and not being a spring chicken any more...better safe than sorry I guess.   

[pammartin]

Mlk, my symptoms were weird.  I was out of breath after short walking distances, I usually half run to where I am going because I can't seem to slow myself down.  I was passing out on a regular basis, I wrecked my car into a local bank not once but twice within minutes.  Minor damage, but I could not judge the car. I know this know.  I had no energy and I almost missed my son's graduation last year because I didn't have the strength or air to walk into the college campus. 

 

I did have fluid around heart and lungs, but they were treating that with steroids.  I slept a lot, wheezed a lot, forced myself to use the bathroom because I had to move. I slept on the couch, I could not manage our stairs without getting faint.

 

My blood pressure was ok, but PH is found within the internal heart pressures.  And Echo is a good test but not as accurate as a right heart cath.  Once I was diagnosed, it was over 3 months before I got back to being somewhat myself.  I spent 9 weeks with a picc line and IV Remodulin to treat PH. Now I take Adcirca, Letairis, Cumidin, and low dose aspirin. It took about 3 months before the Ph was stumbled upon.  Even though I was undetectable, the blame went to the CML. 

 

I have what is called idiopathic PH.  It was labeled as severe but my pressures have reduced greatly. I had a reaction to something 3 times last week so I was put on Benadryl, prednisone, and OTC meds.  Most people do not recover at all and the disease progresses.  It my case and others not being documented there is repair after the Sprycel was stopped.  I have been off Sprycel since March 2014.  Before that I took it since October 2011. 

 

If I can be of any help, please let me know.  take care

[chriskuo]

Mr. Tee,

 

Have you been tested for pleural effusion?

[Trey]

The purpose for EKGs while taking Tasigna or Sprycel is primarily to check for prolonged heart QT interval.  While prolonged QT interval can sometimes cause shortness of breath, the shortness of breath associated with Sprycel is most often an issue of fluid build-up, generally around the lungs and possibly around the heart.  Xrays are not always accurate enough to show the fluid unless it is a large amount.  So even if the fluid build-up cannot be seen by Xray, it can still be an issue.

 

http://www.brighaman...thmia/LQTS.aspx