Herceptin Heart Attack

Hi,

 My MUGA and echo results were also similar.  I like the echo more ( if one has to have repeated tests)  cause you do not get the radioactive isotope but apparently MUGA is more accurate for an exact number for ejection fraction.  However the issue to me is what shows what is really happening to the heart.  Right now I am trying to find a cardiologist who is familiar with cardiac problems caused by  herceptin, other chemo.  I am taking beta blockers for a few days now  and no change in blood pressure but everyone is different.  If your MD puts you on heart medicine, I recommend taking your BP regularly.  If I hear back from the inventor of herceptin whom I am writing to re cardiac issues and herceptin I will let this list know. Best of luck everyone.  We do not  need this additional stress  . LOL   But nice to know I am not alone in this. 

Hoping you're (and the rest of us here too) are in the group that gain some points back. Good news that all else is good with your heart. My BP tends to run 90 to 100 over 60. The doc put me on coreg and I am yawning a lot, but otherwise not feeling tired, so I seem to be tolerating it just fine. Sorry you had trouble with it.

TonLee,

I presented the same concern to my doctor, he assures me my heart will recouperate. I'm crossing fingers for ya that this roundly true.

You mention earlier your BP... I'm always in a similar range as yourself, or lower. But I'm already on a weekly dose (instead of three wks) w/ Herceptin + Taxol, for other health reasons (FMS). How many tx were you meant to recieve in total?

Hi everyone,

 I am going to see a Stanford cardiologist who has been doing research and also publishing on herceptin and cardiotoxicity so I plan to definitely ask him about the stats.  What does he think is currently going on with herceptin causing heart damage.   The big question I have is if you have to stop herceptin cause it is causing heart damage, than does that compromise your risk of reoccurence?  How do they really know how much herceptin is needed? .  IN USA it seems we often think more is better but in this case it might not be.  Have any of your oncologists discussed what the prognosis is if you do not get a full year of herceptin?    I wonder if they have a clue??

I have had herceptin every 3 weeks since mid March to about mid October.  Now my only symptom is  finger pain in one joint, neuropathy in feet (probably from Taxotere and Carboplatin) and fatigue (possibly due from the beta blocker they put me on).    I will let you know what this researcher cardiologist says about herceptin.

I only just started feeling heart palpitations or heavy beating. I think it is the same thing arch purple described. I never noticed it before the last echo, but have since. I get another echo next Thursday, will let you know if my heart has rebounded after that. The cardiologist told me it is her job to get me back on track with the Herceptin. She said it's important for me to finish. I am not sure if the onc feels the same way or not. I have not seen her since before the echo. But she is definitely deferring to the cardiologist on when to resume Herceptin. She also just had a baby on Tuesday, so won't be back for a while. On the phone, she told me she sees this in about 10% of her patients and they've always gone back to normal. She is pretty bad at giving anything but good news though, sometimes I think she sugar coats things.

TonLee - Poo. Disappointing. Our bodies are so amazingly adaptive and resilient (just look at what all you've been through already!). I'd still place my bets on improvement/recovery. So I'm put'n it 'out there' (universe-vibe) for ya....

TonLee - I think it will come back for you too, with your fitness regime.  There are exceptions to every rule, so maybe that 3 month thing doesn't apply for you - you needed 3 1/2!  Hope so anyway!  I also think you will be good minus those last 3 H only.  That is my story and I am sticking to it...

Hi Tonlee and others on this list,

I think that this whole issue of significance of the   EF  we really don't have a lot of good data on it.  How do they really know if it is  3 months vs 4 months for the heart to bounce back.?  .   It is all based on statistics and you could be the one that doesn't fit the norm.  also I learned that depending on who is  reading these tests there could be a variation in the value.  .  I asked if the same cardiologist could read it each time which would then eliminate the problem of inter rater reliability.  The tech said no,  but I am going to press this to see if I could get the same radiologist or cardioloigist to read the tests.  Ton Le- I think it is great the exercise you do. I love exercise and am pretty frustrated they are telling me not to do much at all. I  just got a one year old labrador  who is energetic so I am already walking him a lot.  I can't imagine that type of exercise will tax my heart.  . My positive  thoughts are with all of you.

TonLee:  I have true faith that you will get more function back in your heart.  If Herceptin stays in our bodies a while after administered then who's to say how long it will take our heart to repair from it.  I know they have general guidelines they go by, but every one is different. We all are reminded of that every time we get on here and read.  Not to mention the fact that my cardiologist always reminds me that echo results can even vary depending on what time of day you take them, not just who reads them and how they are interpreted.  They are also just a guideline, maybe if someone else had read it, it would have increased a couple of points.  Your body is capable of healing and I believe in time it will do just that.  Keep the faith!