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Possible Heart Problems Sprycel

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All,

I have been in a battle with my brain for the past month regarding the condition of my heart. I was diagnosed September 29th 2019. I was put on Gleevec first and encountered a lot of weird side effects. I first dealt with Ear problems, I had an earache feeling. Then I start dealing with some sort of Nueropathy, the backs of my arms started getting a weird sensations primarily my left. The sensation was like a burning but accompanied with Numbness. The numbness moved down to my legs shortly after that. I also had some chest pain. I visited the ER with those systems and had a CT scan done with contrast and they assured me that my heart was fine and that there were no clots. They said it is possible it could be Peripheral Neuropathy due to the meds. I hadn't seen many cases on that and have posted a couple responses on here inquiring about it. After three months my oncologist said it was time to move to another TKI. I was moved to Sprycel and have been on 100mg for a little over a month. When I first started Sprycel I encountered the standard side effects, headaches and such. After a short time I started to develop Palpatations or what feels like Palpatations about a week in. Any time that I eat or lie down wherever there is pressure on my body I feel my heartbeat. The back of my neck, back of my legs, lower back, all over basically. Throughout all of this I check by Blood Pressure frequently and it is normal or slightly high most of the time except when I go get my bloods drawn. That is where is tends to get higher. 2 weeks ago I was asked to do a Holter Monitor to check my heart beat for 48 hours. I never received any results but did recently get a prescription for a beta blocker, I assume to control the palpatations. I also had an echo done before I started Gleevec and they didn't find anything significant apart from some minor wall thickening in my left ventricle, consistent with my issues in the past with high blood pressure. I was called today 3/3 to schedule another Echo. My last and only PCR was 9%. I am 34 years old and mostly healthy apart from High Blood Pressure that improved as I lost weight. My blood pressure was really good when I first started Gleevec better then it was typically but then I start having issues after a couple months.

 

With all of that laid out, has anyone experienced issues like mine in the past or currently? I am aware that TKI's can cause issues with your heart but I was not aware that it could come on this quickly if my heart is the problem. I also know that it is quite rare for this to be the case. In my typical day I am not short of breath or do I have any shooting pains but I do get a dull ache from time to time in my left side of my chest sometimes it last for a day sometimes it last for a minute. I have been over every heart attack symptom that you could think of and I only have the chest thing on occasion but I figured if something was going to happen it would have by now. I am really grasping for answers here. Please anyone give me your feedback and of course offer any suggestions or any kind words. I need some positivity because my anxiety is out of control right now.

Thank You

Shawn J

Shawn, I was on 400 mg of gleevec for 9 years and didn't have many side effects other than an occasional eye bleed and a little rash on my forehead. As soon as I switched to 100 mg of Sprycel my heart started racing at 100 mph. Also had an irregular heart beat. I talked my Dr into dropping to 50 mg of Sprycel and my heart beat is pretty much back to normal. Every time I talked with my Dr she said she didn't think it was the Sprycel, but as soon as i dropped to 70mg then to 50 the issues with my heart have gotten much better... with 100mg of Sprycel I felt like my heart was about ready to beat right out of my chest!!

 

Tom

Tom,

Thank you for the response. I got the call soon after posting that my Holter test was mostly normal apart from a very rare I am guessing once or twice during the test extra heartbeat. Also my heart rate was elevated at times but was also listed as rare. It is good to hear that a dose reduction helped you. I pushed my doctor to start me at 50mg of Sprycel but he told me he was following standard protocol. I thought it would be ok but he didn't want to. I am waiting for this journey to settle, it has been a hard road. I know having a positive attitude can have great benefits to ones treatment but it is really tough sometimes.

Shawn J

I am on 100 mg of sprycel and at times I can feel my heart beat in random places. It has been most consistent in my lips. Super bizarre. I am not sure if what I'm experiencing is anything close to what you are describing but I am pretty sure these medications cause some really strange side effects. For a few weeks I was having trouble swallowing. Better now.

Shawn, I felt terrible on 100mg. I had a hard time, but insisted and talked my Dr into dropping to 70mg then 50mg and so far for the past year everything is good with my counts... nothing has changed.  She really didn't want to,  but i will tell you i feel so much better. I'm trying to talk her into dropping to 20mg, but so far she doesn't want to. I will keep trying!!

 

 

Tom

Tom,

Talked to the doctor today about dose reduction, denied again. He wants me to stick it out until I get a couple PCR results under my belt. He is still of the opinion that hitting the illness hard is the answer. I feel much better on Sprycel then gleevec but the palpatations drive me crazy. He said he has encountered many patients with this problem on most of the tki's. I did get my second PCR drawn today so we will see what it comes back as.

Thanks again
Shawn J

Shawn,

I was diagnosed in January of 2016.  I was 45.  I am also an insulin dependent diabetic since I was 20.  I also had high blood pressure controlled with multiple meds.  I was put on 140mg of sprycel from the start.  After 5 months it was reduced to 100mg.  Last year I was in a car accident and subsequently had an echocardiogram which showed fluid around my heart.  This lead to a stress test then a cardiac catheterization.  All my arteries were relatively clear. Less than 20% plaque.  However there was evidence I had suffered a heart attack.  A small portion of my heart was dead.  They couldn't determine how long ago the heart attack happened only more than three months.  My Cardiologist did not believe my HTN was the cause. He insisted it was the Sprycel and wanted me to stop immediately,  My Hematologist disputed this.  However we stopped the Sprycel and I tried Gleevec.  For three weeks I suffered the worst diarrhea and vomiting I can remember.  I lost a ton of weight and couldn't continue. I went back to Sprycel but at 50mg.  That was in June of 2019.  I did have throughout the years some periods of shortness of breath, some lymph node swelling and fatigue on the 100mg of Sprycel.  Currently on the 50mg I've not had any shortness of breath swelling or fatigue.  Also it is worth noting that through all this I had an excellent response to the Sprycel. For the last year my BCR/ABL test has been 0.0000.  I was told at my February visit I was eligible to try for treatment free remission. At that time I declined as I want to wait until I hit 5 years on the Sprycel.  I hope this helps you in some way. 

Jim