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#1 janner25

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Posted 05 January 2011 - 03:45 PM

So I had my ECG/EKG done today to see if murmur is related to anything or not.  A few interesting findings....

1)  I believe my normal heart rate is in the 70s or 80s (again - not something I really used to pay attention to but will from now on).  I was over 100 almost the whole time and got to 116.  Nothing crazy like 140 - but could explain some of my shortness of breath while talking or even walking up the stairs.  Cause: UNKNOWN

2)  There was some leakage out of the valves - again - could be normal for me - since I didn't have a baseline ECG before starting tasigna, don't know...and don't know if tasigna could cause this or if this is just normal course of life.

3) Don't know anything about the QT Prolognation (and after reading some stuff, looks like it is a formula anyway to diagnose)

So short answer: still don't know anything.  This information was from the tech, not the doctors report.  My aunt who is a nurse said that if there was leakage, that could explain the sound of the murmur?  So now I'm not sure what to hope for.  Do I hope for an abnormal reading so I don't feel like I'm going crazy and that I'm going to feel this way forever????  Or do I hope it's normal and pray that my heart calms down some.... I'm 36 and can't imagine feeling like this for much longer.  My boys - husband and sons - miss the old me....I miss the old me.  I know it's only been less than 3 months, but I feel like I'm not getting more energy or feeling better - I feel worse...more tired, out of breath.  I had no symptoms before diagnosis and now...just could cry!  OK - I'm done my pity party - thanks for listening .



#2 WoofWoof

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Posted 05 January 2011 - 04:15 PM

Hi Janner- As I have learned, shortness of breath can be caused by any number of things.

The QT prolongation is measured by the ECG so the cardio will read it & tell if it's an issue.

There are plenty of meds that can help your heart rate so don't worry about that. They have mine down to about 50 at rest. My EF (volume of blood pumped) was very low but through medication is now doing well.

This is a good place to have a pity party and wouldn't be normal not to experience them once in a while but hang tough and live life.


I have cancer but it doesn't have me


#3 CallMeLucky

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Posted 05 January 2011 - 04:47 PM

Hey Jan - it is really hard, plain and simple and your not going to be the old you, you can be close, but it won't be exactly the same, it's obvious there's no going back as much as we would love it.  All I can say is to give it some time, it has only been three months and there is still a lot going on.  Things seem to settle down for a lot of people over time.  Is that because their bodies get used to the drugs?  Maybe/probably.  Is it because the CML is being cleared out?  Maybe/probably.  Is it because you are under an unbelievable amount of stress due to going through a major emotional trauma?  Probably.  Don't discount your emotional state, a cancer diagnosis is very traumatic and it takes a toll.  I think it takes a while to settle down and get back to a new sense of normal.  Some people handle better than others so how long it will take you vs. me or someone else is anyone's guess.

When I was 27 years old I started to have a heart problem.  Rapid fluttering heart beats that would take my breath away like all the air got sucked out of the room and it had nothing to do with an attractive girl walking by .  I went for all kinds of tests and all they could tell me was that physically I was fine.  I asked if it could be stress and the doctor scoffed and said stress would not cause what I was having (but they had no idea what was causing it).  I went home and gave it some thought and a few days later I quit my high stress job.  The heart palpitations went away and they didn't come back until recently when I found out I had CML.  I get them sporadically now.  Is it the Gleevec?  maybe, but probably not.

I'm not saying this heart thing is in your head (even though it sounds like I am).  You may have something going on there and I suggest you remain diligent about exploring it and keeping on top of it.  But also acknowledge what you have been through and recognize the physical toll this has taken on you simply from hearing the doctor tell you that you have cancer.  I hope that over time this will settle down for you and this turns out to be nothing serious with your heart.  The incidence of heart induced problems from TKI's seems to be a pretty rare event.  I hope the best for you.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 simone4

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Posted 05 January 2011 - 05:04 PM

Janner, I have two leaking valves; one that my father, who was a cardiologist,

discovered when I was in my twenties  another that has appeared since

my Dx. of CML 12/08.  I also have a prolapse of the mitral valve.  I know

that the only way for a proper dx of these problems would lie in an echocardigram.

You should insist on one.  It is simply an ultra sound of the heart but the

results would be more definitive that an EKG. The regurge (leaking) can

be helped with certain heart medication. My "murmur" was barely detectable

at my last cardio appt. And yes, it cause contribute to fatigue.

Take care.

Simone



#5 janner25

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Posted 05 January 2011 - 07:03 PM

Thanks so much!  I had the ECG today...so now I'm just waiting on the doctor report.  I figure the longer I don't hear from the doctor, the better, right????  If I don't hear back by Monday I'll call.

I know this is a lot to digest...and I pride myself on being an optimistic person...people come to ME when they need a pick me up and now I'm the one who needs it and honestly don't know where to go - I have some really great friends but don't want to burden (although I know they would love if I would talk to them about things...just hard to be the listener needing to become the talker).  Its really hard for me to tell people I need help - let alone accept that I actually want it!

My optimistic self keeps saying it is the medicine that is making me feel this way and in a few months, I'll be back.  But then I think, I was in such an early stage - my WBC was a little over 28 (not 280...28 - but of course the BCR-ABL came back positive in chronic stage) - so why is this medicine still kicking my butt?  My blood counts are all good now (WBC, platelets, hemaglobin) - so why do I feel this way???  Its a vicious full circle that leads me back to the medicine that really is saving my life!  So I'm taking a medicine - to save my life - but is potentially going to give me a different life from an energy level and who knows how else...and I need to accept that!

But knowing that I may not be back to my 'old' normal self is a hard thing to accept.  But I guess this is all part of the process...and knowing this is my 'new life' a process I need to go through.

WOW!  I really am ranting today ...wow!



#6 jrsboo

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Posted 05 January 2011 - 07:53 PM

Dear Janner,

Thanks for inviting me to your pity party.

Wow, we are twinsies!  My diagnosis was at the very end of September.  I am only a few years older than you, but still younger than the average for this lovely disease.  I had no symptoms of it, was feeling fine, just went in for a physical with new GP, and Poof!  Life as I knew it was over. 

I am still dealing with tons of side effects, it feels like I am going nuts.   I too was the person everyone called on to come and help with their problems.  But I was good about telling people and asking for help.  Some did, some did not, and those that didn't really surprised me.  I had some, what I thought were, extremely close friends who just disappeared. 

Like you, my white count only made it up to 32 and then came plummeting down with Sprycel. 

And I am getting pretty darn mad at having this crappy disease.  It is hard.  Really hard.

My law practice is in ruins, I just got a call from the court today wondering about my hearing this friday.  I HAVE A HEARING THIS FRIDAY???  I have no recollection of it.  My brain is mush, absolute mush.

I spent 2 hours at the grocery store today trying to get food, but was afraid of the aisles for some reason.  I am sure that this is from the Prednisone I have had to be on for the skin rash this week, but still.....the paper aisle was too much for me.  I couldn't decide about anything.........luckily husband was along to get a good laugh.  He said it was fun to watch me start down an aisle then back up as if the floor was a trap door and I might be stuck.....

I am going to have to declare bankruptcy since cml is the 2nd disease for me this year.  I spent Spring 2010  trying to figure out what was wrong with my brain, turns out to have been some monster Vertigo attack, but they were thinking I had a brain tumor or MS since I could no longer talk or read, much less walk.

Thank heavens I don't have children, I don't know where you get the strength to do that.  I can barely take care of myself and my dog.  My husband has been fabulous, but he is in and out of active duty in the Military Reserves the past few months and is leaving again tomorrow for a long weekend.  Then home for a week and then gone for two.

I just want my normal life back.  It was a very nice quiet little life.  Nothing fancy, just nice. 

I don't know if I can do 30 more years of this. 

Still, it is very nice to know I am not the only one.  That is somehow comforting.  So many seem to be able to just up and go on with their lives, taking a little pill every day.  Makes me feel like a failure somehow.  But intellectually I know that I am doing the best I can. 

Sending hugs to you, and a box of tissues for the crying jags.........

Caroline



#7 janner25

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Posted 05 January 2011 - 08:11 PM

Thanks Caroline!!!!  That's exactly where I'm at right now.  I was doing so well until last week when I had off work with the kids off school and I had TOO much time to think!  And then the heart murmur 'saga' started!  My husband has been wonderful...I feel bad for him because he's on 2nd shift and wants to be home with me to help with the kids to get them off to bed, etc.  I also feel bad because during one of my breakdowns last week he said "I know how you feel"..and I started sobbing saying you have NO idea how this feels!!!!!!  I know he was trying to be empathetic but I feel like this is just long enough to feel like this.  And it hasn't even been 3 months.  I feel bad for him as well because I think he is going to have an adjustment to the 'new me'.  But I will say - he was with me at the dr. appointment when I heard the diagnosis and I could SEE the love pouring out of him as he asked questions.  Never did I feel love like that so I am super lucky in that regard!  Work has been good and very understanding.  I work 8-2 - but have an office in the house...but somedays I think it's too much too!

Thanks for listening (and ranting with me!).    Keep me posted on your progress .



#8 Trey

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Posted 05 January 2011 - 09:29 PM

Regarding side effects, the 3 - 4 month point can be the bottoming out point for many people on Gleevec.  For many, it gets better.  You will not know your new normal until about the 9 months to 1 year point.



#9 janner25

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Posted 05 January 2011 - 09:38 PM

Thanks Trey - do you know the 'bottoming out' timing for Tasigna?  I know everyone is different - but didn't know if you had heard anything?



#10 jrsboo

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Posted 06 January 2011 - 01:22 AM

We shall hold each other up then!

Yes, husband was in tears at the onc's visit when they gave the definitive diagnosis. Which is the first time I ever saw him cry (big Rugby playing guy).  I  was diagnosed pretty darn fast, my uncle is a hemotologist in Florida (I am in WA), but he had my regular dr. run the BCR ABL test the day after the second blood test came back with the increased WBC, total wait time from GP's "idea" to diagnosis..........4 days.

I think that at this point, I (and maybe we) are in the mindset that we have taken care of what needs to be done immediately, to figure out what we have, how to treat it, and have dealt with the "what to do" side.  But then there is the emotional side of being told that you have CANCER and that they cannot cure you.  And you have to live with it!!!!  Running around your body, ready to mutate or attack at any second............is horrifying.  Others on here have said that that gets better, and I am sure that it does.  It just doesn't feel like it today.

Losing the life that we worked for, through no fault of our own is completely unfair.  It isn't like we made a bad life choice and have to live with the consequences.  It just is.  And that sucks.

And I have had my share of meltdowns.   The funniest one was about a McD's hamburger.  I had been dreaming of a hamburger all night long.  Each time I woke up, I thought, ok, I can get up and get dressed and drive and get one.  No no, that is silly.  I will just go tomorrow.  Well tomorrow came, I did the errands I needed to and to reward myself for making through them, I went to McDonalds and ordered a burger for myself, hold the mayo and no cheese (I hate cheese on the burgers), and because I had the dog with me, I got him a double hamburger, no cheese either.  I had a funny feeling leaving the drive through and checked the bag that it had all the stuff in it.  It did. 

OR SO IT SEEMED!  (insert kettle drums here--bum bum bum)

I got home, unwrapped the dog's burger, and it had cheese on it!  I sighed and gave it to the dog.  I then laid out my lunch on a tray table, turned on the TV and unwrapped MY burger.......only there was no burger on the bun.  Just lettuce. 

And I lost it.

Actually fell on the ground sobbing.

All I wanted was the stinking burger and they had not gotten it right. 

And I couldn't even eat the one for the dog, he had already finished it.

Not my proudest moment, but in retrospect, pretty darn funny.

I called McDonalds and the manager apologized and said I could have my order redone the next time I came through.  I wrote his name on the receipt and put it in my purse.  Ending?  I made them give me back all my money.  Even for the fries and Iced Tea.  I figured that by the time I calmed down enough to eat my fries they were cold, and I should be reimbursed for the drive back to the store since it wasn't the one in my neighborhood!

So anytime you want a hug or some reinforcement, you just send a shout out to me.  My regular email is jrsboo@gmail.com, and my blog about all of this is cmldiagnosis.blogspot.com.

Hugs!

Caroline



#11 janner25

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Posted 06 January 2011 - 09:13 AM

Caroline - I'm sorry to laugh at your expense - but that was hilarious!!!!!  I needed that!

I will reach out to you so you have my e-mail as well!  And I'll keep you posted once I hear about the ECG final report.  



#12 CallMeLucky

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Posted 06 January 2011 - 10:26 AM

Joe Pesci on the drive through

http://www.youtube.c...feature=related


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#13 janner25

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Posted 06 January 2011 - 02:13 PM

I LOVE that movie!!!!  That's a good laugh!!!! LOL.



#14 jrsboo

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Posted 06 January 2011 - 02:16 PM

That was HILARIOUS!

Thanks for that.

My choice of the drive through was based on industry standard, that says that the drive through trumps the counter, they make every effort to take care of the cars before the people.  And I was really really hungry.  It took some effort to WAIT until I got home to begin snarfing up my beloved burger............and then was foiled.

Sigh.



#15 jrsboo

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Posted 06 January 2011 - 02:18 PM

Dear Janner,

Excellent, I am thrilled that I gave you a laugh!  Humor keeps me going.

And it must have been pretty darn funny to watch a 45 year old lawyer sobbing on the floor because her burger was missing.  But it really was just the last thing in a line of things.............

Grins,

Caroline



#16 janner25

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Posted 10 January 2011 - 05:54 PM

Preliminary results are in and was referred to the cardiologist...I don't have the final report but the primary referred me based on the preliminary results.  Referred based on the heart murmur, enlarged left atrium, and increased heartrate.  I can't read anything really off the preliminary since I haven't taken doctor handwriting class .  It did say trace of regurgitation (and can't read after the word trace) but trace seems OK.  So I'll know more tomorrow.



#17 jrsboo

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Posted 10 January 2011 - 05:57 PM

Good for you for following up!  And Good for You for keep on going!  I hope all is well, and this is a tiny blip in your file.

Caroline






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