Cardiomyopathy, Cardiotoxicity, LVEF, CHF

[Cannon]

Been away for a while, dealing with 'regular' life stuff (Crohn's disease, one great kid getting ready to go to college, figuring out what to do for other great kid, with autism, after he ages out of school system, my sister had a baby, my father in law died, etc.).

Now it looks like cancer has come back to bite me in an unexpected way. I came to the ER five days ago with chest pain and shortness of breath. Some idiot at first thought it was pneumonia, despite no elevated WBC.

Finally got a cardiologist to look at tests, and while I now know it was congestive heart failure, no one told me that, just kept scheduling more tests day after day. Heart Echo showed significant enlargement of heart. Angiogram showed my arteries are beautiful and clean (unlike my house!), and now diagnosis is SEVERE cardiomyopathy with ejection fraction of approx 20%. I had a muga at end of treatment in 2008, and while I don't remember exact #, I know it was near 50%. So while I wait for my next chat with cardiologist, I've been googling, etc. and I'm a little mystified.

This type of SEVERE cardiomyopathy from chemo cardiotoxicity seems to be extremely rare, and especially occurring so long after treatment. My guess is it may increase as time goes by, as I was one of the earlier beneficiaries of Herceptin for non-stage 4.

The cardiologist has said the cardiomyopathy may be reversible, but the little info I'm finding on web suggests otherwise (50% survival at 5 years). I'm ok with tough odds, and I treated the cancer aggressively so that I could be here to have this kind of problem. And of course I'll be asking the cardio my questions today when he releases me from hospital, and scheduling a 2nd opinion ASAP.

But I am also wondering whether any of the brave, knowing folks on the board have any relevant experience or information.

Thanks
Rebecca
(haven't updated my signature - I am now 5+ years out)

[Cannon]

ok, revision - he doesn't think it was chemo induced - still could be herceptin related, but if it is we probably won't know. More likely viral, for which reversal is likely or another cause, unknown. Whatever.

[sarah]

Hello Rebecca,
could be radiation.
I've been off all treatment for a year and a half (herceptin, Femara) and 6 years out from chemo and radiation but.....
I've had a slight breathing problem with hills for about 6 years
They discovered I had a fibroid in my lung from radiation then.....this winter in the cold mornings when I walked my dog, I had to stop because I had pain in my chest - stupidly I thought it was winter asthma (my mom had asthma) but....
go to my GP, she's says probably your heart but I'm sending you to a cardiologist and pneumologist. both found problems but....had a coronography (looks up the arteries) and voila, blocked artery, no plak to speak of ---- all due to radiation. so just had an angioplasty and stent put in.
I had 2 differeent cardiologists do echos on my heart and EKGs and both were great, no problems. but on a scintigraphy (hope the word's the same in English) the cardiologists saw heart muscle damage and informed me that I'd had a heart attack --- that was the chest pain and problem breathing!!! shock to me!!! and they said no way it was the herceptin and that the radiation caused it. Every single doctor (different hospitals, didn't talk to each other), all said it's the radiation and even checked my tattoo points.
So I think I may post something about the potential of radiation induced heart problems so people are awate of symptoms.
good luck with your problems.
health and happiness
sarah

[ElaineM]

Wow !! What a roller coaster ride you have been on. I am glad you are getting the help you need and able to come and chat with us again. Take good care of yourself. I have my fingers crossed that you will get 100% well soon.

[Sheila]

Rebecca....my LVEF has also dropped dramatically, although the symptoms of CHF have been treated with Lisinopril and Coreg...both strenghthen the heart, amoung other things. My last echo was read at 36%...I remain on Herceptin as without it I probably would have mets everywhere...I am always wondering if it is the Herceptin or the chemo as both have an effect and take a toll on the heart. I am anxious to be retested as I feel better now than in the past...pleas ekeep us updated on what you find,. I often wonder if they will see more of this in long term metastatic patients...I have been on herceptin for 9 years straight.

[Cannon]

Thanks for the encouragement and sympathy. I had not thought about the radiation, although it certainly could be that. I have both my follow up with cardiologist from hospital (in NJ) and an appointment with another cardiologist (in NY, Mt. Sinai, where all my specialists are) tomorrow. Apparently we won't know much for a couple of months until I've been on treatment and they can do another scan.