11 replies to this topic

[knoppl]

I just had my 2 year cancerversary and still holding an undetectable PCR. I saw a cardiologist this morning about my heart pounding. It was worse in the fall when I had a lot of work stress. My heart would pound randomly and necessarily with activity or any special event. I mentioned it to my hematologist when I saw him in Dec and now saw the cardiologist today. So far all looks good but will have to wear a holter monitor. The palpitations have decreased significantly this last month. I do get light headed once in a while too. I am curious if Gleevec has a history of causing heart damage or irregular heart rhythms or is this just a possible drug side effect. It could even be stress related as I have had less episodes since before Xmas. Just curious on others thoughts and if anyone else has had similar experiences on Gleevec.

[CallMeLucky]

I had this happen somewhere around 10 months or so into treatment.  Did the Holter monitor, heart echo, etc.  Fortunately all came back good.  It eventually subsided.

There are rare cases of Gleevec causing heart problems.  It is not common, but it can happen.  You should check it out, mostly to get a baseline to compare to down the road.  Probably fine, but good to be diligent about it.

[pamsouth]

A year ago I developed an irregular heart beat, pretty bad.  Blood pressure would go up real high, then drop out of the bottom.  I thought maybe my blood pressure cuff wasn't working, so I went to CVS and took it 3 times, waiting 5 to 10 min in-between each reading. The pharmacist said that can't be right you would be dead. So I went to a cardio doctor, the nurse came in took my blood pressure and ran down the hall to get the EKG.  Doctor came in and decided we would try a different blood pressure pill, Metropolo, took a few weeks, but is working hard.

FYI,  I have at least for many years and somewhat of an irregular heart beat, in that my heart skips beats/pauses, then catches up, but blood pressure stable.

Like I said a year go blood pressure was irregular and up and down, two extreme in short intervals.  However I had been under a lot of stress at the time as my husband had been ill and a death in the family.

So I don't know to blame it on my stress or the Gleevec, who knows?  All I know right now my blood pressure has been good for several months, since changing blood pressure medicine. 

PamSouth

[Pin]

I've had weird heart issues too - fast heart rate, chest pain and low blood pressure. I did have a cortisone injection which shot my blood pressure up initially, so I'm wondering if it is related to this somehow?

I had my heart tested about a year before I was diagnosed as my dr found a heart murmur (similar problems - chest pain, palpitations etc.) but there was nothing structurally wrong. He also tested my thyroid (now I wish he had run a full CBC then I might have been diagnosed a year earlier! Or it might not have shown up...) but that was fine too.

Hey Pam, did they ever think that your irregular blood pressure was a Gleevec thing? How high/low was it compared to normal? Mine has been fluctuating (around normal though I guess) from around 95/60 to 130/90.

[GerryL]

Hi Pin,

Normal blood pressure is aroun 120/80 and they also allow for it to go up a little bit as you age (I think my doc said 130/85). My blood pressure has dropped since starting Gleevec and most times is in the low region. Fluid retention sends it up again.

[Susan61]

Hi:  First let me say Congratulations on your anniversary of PCRu, and I would not worry about the heart and Gleevec.

Your getting checked out, and everyone should do that periodically.  So many things now can cause what seems like heart problems, and in most cases not heart related at all.  I just had a conversation with a good friend of mine, and she was getting all kinds of heart palpitations etc. etc.  She was on Cholesterol Medication.  She said she stopped taking it, and feels great.  A lot of these medications cause more trouble then help.  There are a lot of things to research as to why we get the things we do, and I do not believe it has anything to do with the Gleevec.

     Like Lucky said there were some rare cases from Gleevec.  When they mentioned the possibility of heart related issues, everyone was in a panic.

     You are probably just fine.

[pamsouth]

Pin, 

My Blood Pressure fluctuation was  really extreme, the highs and low in short intervals. In fact one night I went to the ER and they gave me something until it came down.

I was using my cuff which was only a few months old, but I thought maybe it had malfunctioned, so I went to CVS and used their cuff as the pharmacist instructed, wait about 5 to 10 min take a reading, then wait again, (do this about 3 intervals). I wrote down each reading and gave it to the pharmacist and he said that can't be right or I would be dead, but that was the same thing as my cuff at home was doing, BP all over the board.

It is hard to remember the readings, but some examples, maybe 189 over 110  or then maybe 180 over 80, then maybe 10 min later it would be 60 over 40, then ten minutes later back up, numbers were crazy.  I didn't really feel like I had anything heavy on my chest or pain, just sort of a weird feeling in my chest I don't know that I can explain it.  I knew something was wrong not just because of the cuff reading, but a strange feeling in my chest, plus I felt like I had to catch my breath, I do remember that, as I was having a hard time talking, I would have to stop and breath in between words or phrases.

I went to a cardio and after the nurse took my BP (189/80 I think) she ran down the hall to get the EKG, I think the heart beat was irregular as well.  The cardio doc came in and he was a little shocked.  After talking to me a while, He said PamS you look calm, perfectly normal, like there is nothing wrong with you, let alone to have CML.  Well that my story!!  I have been misses church for awhile had a cold on and off and it takes me down, so preacher calls yesterday and wants to come out to house.  I keep telling them with CML when I don't feel well I just take it easy for awhile.  Especially in the winter when the flu and colds is going around, but hey everyone says you look great, and I say  don't feel great.  But yes sometimes I do feel pretty good to have CML, except for chronic bone pain. I don't take anything for it, just exercise and move around.

The Metoprolol SUCC TAB 50gm.  It is know to help regulate irregular heart beat. Actually it is a very cheap drug maybe $10.00 or $20.00 for 30 day supply, I get a 90 day mail order and I think I pay $20.00.   It did take a few weeks to get regulated and then the BP kind of got low for a while, I think because I was slowing my pace down and sleeping more.  But now it pretty much stays normal, well, that is until I got to the doctor, then blood pressure has a tendency to go up, to maybe 140 over 89 or something like that, but then the next day it is back to normal.  I think they call that the white coat syndrome. 

Again at the time, I was under a lot of stress. My husband was very sick.  I was feeding, dressing, bathing him.   I thought I was going to have to put him in a nursing home.  It was like taking care of a baby.   It was hard to get him in and out of car and to walk, he used a lift chair & a walker.  He was still getting worse and the doctor doubled the dose, then added pain pills, then neurotin, etc.  He couldn't get out of bed, He would lay his head on the table to eat, so I put him in the recliner and fed him, his hands were swollen hugh. 

I was taking him to tons of doctors, as his labs were a mess, doing all kinds of test.

It turned out, just as I had suspected, he was allergic to the arthritis medicine.  I weaned him off the new arthritis medicine, (a generic of mobic).  I think it was called Maloxicam or something like that and the other med's. , and got the doctor to send him to Physical Therapy.  He is doing fine now and has been working part time for several months, he is 70 years old.  I don't think the seniors can take large quantities or mix tons of pills.  Perhaps I should have taken him to a geriatric doctor.

It wasn't the doctors who figured it out, (that he was swollen for the arthritis med's) it was me, his wife.  It was killing me and sure didn't want to put him in a nursing home. Then we had a death in the family. I think having CML & Gleevec, and all of the above, sent me over the cliff.  Or maybe my old blood pressure medicine of 10 years just quit working, I don't know?

A few months later my previous oncology wanted to change me from Gleevec to Tasigna, but I said NO!  I also went to another oncologist for a second opinion and am in the mist of changing oncologist which will be running their own labs at their own facility instead of sending my labs out of state, like my previous oncologist..  I did not know their was a oncology group close to me (15 miles) that did their own labs.  Mine were being sent from Indiana to Pa.

It's a long story and really all you wanted to know was about the heart problem.

PamSouth

[Pin]

Thanks pamsouth, that's a really interesting story about your blood pressure - amazing that it was so variable within minutes - mine doesn't fluctuate too much, so hopefully it's nothing to worry about.

I'm so glad you worked out what was wrong with your husband, that must have been awful! It's incredible that an allergy to meds could cause so much debilitation.

[pamsouth]

"t's incredible that an allergy to meds could cause so much debilitation."

That is why they write or list all those side effects.  But when I complained they said oh, it's like taking aspirin, there are only a few people who can't tolerate aspirin.  Well guess what he was one of those few who couldn't take Mobic.

My son 39 just got a settlement from a law suit for taking a medicine that caused a lot of people including him to be diabetic.  Diabetese was not listed on the warning label. I think it was seroquel, it raises the blood sugar.

PamSouth

[Happycat]

Well, I know what has caused my mother's heart to race, skip beats, etc.  Years ago, it was thyroid issues.  She's on synthroid, which periodically needs adjusting. Too high makes her hyperthyroid, and her heart will race.

The other new issue is a small hole in her heart, which  her cardiologist said can cause atrial fibrillation with similar symptoms. So she is now on Pradaxa, to prevent the possibility of a stroke. Hasn't had any palpitations or racing effects since then.

My point is that not all of our symptoms are due to gleevec, and should be looked at as a potentially separate health issue.

Traci

[knoppl]

Thanks everyone for posting. I should post more when I feel worried or down about things. The support here is amazing. I am having another echo and a holter, just to make sure all is fine. The cardiologist thinks that everything is fine but just being cautious. It is really hard to not worry when something else may crop up. One serious illness is enough. Thanks again everyone. 

Some days it is so hard not to get down about having cml especially when I am more tired, achy, swollen etc. I am so grateful for these drugs but still so envious of others with good health. But what I have realized is that it is really hard to find anyone anymore that doesn't have something wrong, an illness, aches, pains etc. Thanks again everyone!

[Susan61]

Hi:  You sound better already.  You sound more relaxed.  Let us know how all your tests come back, and just feel blessed with your PCR results.  When you get uptight, just think about how far you have come in this battle with your CML.  Take Care

Susan