Heart Failure

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sandejosgirl
sandejosgirl Member Posts: 57
edited November 2014 in Young With Breast Cancer

Hey all.  I was dx last Mon with systolic heart failure.  The cardio I was referred to was terrible a 15 min apt and very little info.  Anyone know good websites for chemo related cardiac dysfunction and more info on progression and prognosis for CHF from chemo?

Thanx.

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  • JoeyJamesMom
    JoeyJamesMom Member Posts: 110
    edited November 2014

    Hi,  I am so sorry to hear about your diagnosis.

    I am not sure if you will find this helpful, but I thought I'd mention it, just in case.

    Before I started my A/C chemo treatment my oncologist wanted me to have an echocardiogram to make sure I

    didn't have any existing heart issues, so I did.

    When I met with him to talk about the results he told me that my heart was damaged, he said my ejection fraction rate

    was 49%.   (again this is before any chemo)

    So, I saw a Cardiologist and had a muga scan.  The mugu scan showed my ejection fraction rate was 61%.

    I walked around for almost 2 weeks knowing I had breast cancer and thinking my heart was damaged.  It was 

    terrible.

    I am not sure what tests you have had, but I was told the muga scan was more accurate then the echocardiogram.

    Getting a second opinion is always a good idea in my book.

    I wish you luck.

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  • kimag
    kimag Member Posts: 114
    edited November 2014

    Hi, I have looked up your other post and seen that you had Adriamycin as chemo and radiation. Was radiation on the left - heart side?

    Adriamycin itself is known to cause heart issues even years later, if you ad radiation it is even more likely to develop some heart issues...I know it sounds depressing some avoid adriamycin and negociate different chemo agent. I am 37 and had adriamycin along with high chest (left) radiation 18 years ago, this year I have noticed that heart echo showed 50% ejection fraction, my family doc did not see it as strange but since I knew I possible may have issues I insisted on seeing good cardiologist. 

    As Joey mentioned above get second opinion and better test if you only had echo, my cardio said echo is not reliable for ejection fraction and send me for heart MRI (which I await now in December) he said echo reading varies. Also try to find cardio who specialize in cardiotoxiticy sorry spelt it wrong, someone who is familiar with heart issues after adriamycin and radiation (they are a bit different). 

    Here are some links:

    http://news.cancerconnect.com/cardiac-toxicity/

    http://newsroom.heart.org/news/many-breast-cancer-...

    http://www.internationaljournalofcardiology.com/ar...

    http://www.breastcancer.org/treatment/side_effects...

    Why have you seen cardio? check up or you have symptoms? From your description i would search for better cardio once who knows what should be done. My cardio said there are some meds like beta blockers which he may consider in my case should MRI confirm dropping ejection fraction... He said the prognosis are not very clear as only now patients survive long enough to have issues post treatment and new trials results are published. He said the point is to react as soon as possible, monitor heart condition and if any changes start helping the heart by meds or changes in life style... I have no high blood pressure, nor cholesterol issues but I could exercises more and in proper way to help my heart.   I am not happy with it, it is hard to deal yet with another side effects of my treatment 18 years ago... as a matter of fact my BC found this year was radiation induced and it is now know SE from high radiation to the chest in the younger age... I am frustrated and sad BUT the most important part (which I sometimes forget) is that I have survived!! I had 18 years, I finished high school and  university and merried and have  3 wonderful boys I am not sure I would survive to enjoy this all if not adriamycin and radio.. after all adriamycin remains still very powerfull chemo and my chances back then to survive were 50%,  couple years back I would have even less... Of course I would like to live another 18 or more as much as possible years to see my boys grow, the youngest being 16 months... and I am scared that now with BC and possible heart issues it looks quite dark sometimes but when I feel very angry I try to ask myself would I reject adriamycin and radio back in time and risk not living long enough to cuddle near my hubby, to enjoy evening conversation with my 9 years old about school and life, to see mischievous spark in my 6 years old eyes when he is again up to something, to breath sweet baby smell of my youngest and feel his little hand patting my face... and I know I would have done everything to be able to be with them.

    Here is link to Heart Center in Portland OR I think this is the closest for you looking on your info, they both specialize in cario oncology which are SE from onco chemo

    http://www.ohsu.edu/xd/health/doctorresults.cfm?su...

    Take care, hope it helps


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  • sandejosgirl
    sandejosgirl Member Posts: 57
    edited November 2014

    I moved and haven't had a chance to update my personal info yet.

    Yes, I'm already aware that rads can cause heart issues as well as the anthracyclines.  I did have a MUGA before treatment and an echo a year ago.  My MUGA showed an EF of 65, the echo last year showed an EF of 59 for a nice post-treatment number.  My recent echo showed a drop to 45% and while the number itself is not terribly low for heart failure it does still qualify and I have some side effects.  From the reading I have done so far, heart damage from chemo is permanent and progressive so my deal is trying to find more than just the one page stuff on general websites.

    I started a beta-blocker already and am looking for a new cardiologist in the Greenville, SC area.  One who won't just treat me like a 65 yr old overweight male.  As far as I am aware, it is a confirmed dx of systolic heart failure/CHF and even if the echo was off that it wouldn't be off by that much, but I will ask when I go into a different cardio on the 17th.  I'm 36 and in decent shape, weight, blood work with 5 kids including a 5 month old so I want answers that aren't just the general crap.  The stats for CHF of any kind, any stage, are fairly terrible in my opinion and I want to find someone who can give me realistic expectations about what to expect.

    I too, am glad I did my chemo.  I think that I would already be dead without having done it giving my stats.  It's just hard to wrap my head around this, we've been so concerned with signs I might have re-occurred, not with post treatment heart conditions.  We've been talking about heading down to Mayo in Jacksonville, FL if we feel we aren't getting good answers here.

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  • kimag
    kimag Member Posts: 114
    edited November 2014

    I wish you luck on your new appointment I hope you will find someone good! I wonder how the betta blockers will work for you, whether it improve ejection fraction... as it will be what the cardio offer should mri confirm issues with my ejection fraction... however I have low BP so we would have to watch for b blockers not to lower my BP too much. I have seen prognosis and it gives me chills... the cardio I was talking to said he does not know prognosis in chemo induced failure as it is relatively new and only now there is enough survivors of cardio induced health issues to try to check it... Would you mind sending me info if you learn something reliable? My MRI is in december so I won't speak with my cardio till january most likely... Would you think there is a possibility that recent pregnancy (mine 16 months ago) could maybe affected heart performance but can bounce back? I had 65% EF 4 years ago, now 50% , i never had MUGA scan as in the past there was no such a test available... all the best

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  • kimag
    kimag Member Posts: 114
    edited November 2014

    sandejosgirl how are you doing? Have you had your new cardio visit on Nov 17th? What the new cardio said?

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