chemo induced cardiomyopathy anyone?

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Jenwith4kids
Jenwith4kids Member Posts: 635
edited October 2016 in Chemotherapy - Before, During, and After

Looks like I'm one of a very small percentage of patients who end up with this. My LVEF is 35% (maybe 37% - either way, it's far too low) and my heart rate runs between 95 and 110. Doc started me on a beta-blocker and next week will add an ACE inhibitor.

I've read one study of one patient who was able to reverse the situation. But my cardiologist said I'll probably be on these meds forever. I see her again next week, and will likely go see a cardiologist who is experienced also in oncology.

Breast cancer, the gift that keeps on giving. UGH. Just looking for others in the same boat.

Jen

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited October 2016

    bump

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2016

    SO SORRY - I had a heart attack during AC Chemo and permanent valve damage from Herceptin. My EF dropped from 65 to 29 and has remained there. I've been on heart meds for 4 years. That's the bad news.

    The good news is I celebrated my FIVE YEAR cancerversary just yesterday and my heart is stable and asymptomatic. I only have to see my cardiologist once a year now. The heart meds (Beta Blocker and Ace Inhibitor) have caused me no side effects that I know of or feel. My heart races once in awhile, but usually during stressful times.

    It is very shocking to realize you have heart issues because of treatment. I always tell everyone I've spoken to about this not to be afraid of the heart meds. They really are your friends. But it is REALLY SCARY when it all begins especially because the shock of cancer is still with you.

    I hope this brings you some encouragement!


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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited October 2016

    hi Denise, I was waiting for you to chime in! My EF is 37%, my doc is pretty confident that we can get it up. So far I'm only on a beta blocker. We'll add the ace inhibitor probably on another two weeks. The beta blocker has me exhausted by 9pm every night - though I made it to 9:30 today! That's progress!

    I'm only a little bummed about this - it seems manageable right now. And as long as it doesn't progress I think I'll be ok.

    It's just so rare...hate to be in this minority, it's cramping my style!!

    CONGRATS! on hitting 5 years!

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2016

    Jen - 9:30 pm - woo hoo! Maybe that's why I am always so tired by 9:30 pm! Actually by 8:30 pm! I didn't realize

    Beta Blockers made you tired - THANK YOU!!! I know have a reason!

    Sending all my best - if I can EVER answer any questions of what I've learned along the way - just PM me!!

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited October 2016

    Looks like we have even more in common - my sister and I were diagnosed two weeks apart!!

    Thanks for the offer to PM you anytime - I'm sure there will be a time when I do that.

    Jen

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2016

    Jen - ohmygosh about you and your sister!! That is just crazy!

    I am so sorry. My sister is now one year out from chemo and having

    a DIEP next week as we both have a Chek 2 mutation. Did you

    and your sister have a gene mutation???

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited October 2016

    I think we were only checked for BRCA, which was negative. She was her2+, I was not. I decided not to do further gene testing - it wasn't going to change my treatment plan. So I figure down the road I might do more testing, when the tests are more developed. I have three daughters... scares me to think about. Just have to keep hoping that strides are made!

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